Scott Benner 12/20/25 Scott Benner 12/20/25

#1714 Defining Diabetes: Total Daily Dose

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Jenny and Scott define S.W.A.G.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner (0:0) Here we are back together again, friends, for another episode of the Juice Box podcast. (0:15) Managing diabetes is difficult, but trying to do it when you don't understand the lingo, that's almost impossible. (0:22) The defining diabetes series began in 2019, and today we're adding to it. (0:26) Go to juiceboxpodcast.com up in the menu, click on defining diabetes, and you'll see a complete list of all the terms that we've defined so far. (0:37) My grand rounds series was designed by listeners to tell doctors what they need, and it also helps you to understand what to ask for.

Scott Benner (0:46) There's a mental wellness series that addresses the emotional side of diabetes and practical ways to stay balanced. (0:52) And when we talk about GLP medications, well, we'll break down what they are, how they may help you, and if they fit into your diabetes management plan. (0:59) What do these three things have in common? (1:01) They're all available at juiceboxpodcast.com up in the menu. (1:05) I know it can be hard to find these things in a podcast app, so we've collected them all for you at juiceboxpodcast.com.

Scott Benner (1:13) While you're listening, please remember that nothing you hear on the juice box podcast should be considered advice, medical or otherwise. (1:21) Always consult a physician before making any changes to your health care plan or becoming bold with insulin. (1:30) Alright. (1:31) We are gonna define total daily dose of insulin. (1:35) So what is that?

Scott Benner (1:36) Is that is TDI and TDD the same are people talking about the same thing? (1:41) Same thing? (1:42) Okay.

Jenny Smith (1:42) Honestly. (1:43) Yeah. (1:43) TDD, TDI, total daily insulin, total daily dose, essentially. (1:48) Right?

Scott Benner (1:49) Mhmm.

Jenny Smith (1:50) Really, it just means adding together what you bolus both for food and correction as well as the amount of basil that you're getting in a day. (1:59) And you add them together, that's your total daily dose. (2:03) And it may look a bit different day to day, especially with those who are using pumps.

Scott Benner (2:09) Mhmm.

Jenny Smith (2:09) Right? (2:10) Because we have these algorithms that titrate things up and down. (2:13) So one day, it might look like forty two, and the next day, it might look like forty eight, and the next day, it might look like thirty nine. (2:20) It you know, and what's changing there? (2:22) Basil.

Jenny Smith (2:23) It's going up and down. (2:24) They might eat a lot more one day than the other day. (2:27) But when we aim to look at total daily dose from a perspective of adjusting some settings

Scott Benner (2:35) Mhmm.

Jenny Smith (2:36) Which is what can be used for kind of going forward, we take an average usually over the past seven days or the past fourteen days to get an idea of what is typical.

Scott Benner (2:47) Yeah. (2:48) I I was thinking that probably nowadays, one of the places this still comes up, right, is people who are getting off of MDI and going into a pump or or going into an automated system, especially like Omnipod five. (2:59) Right? (2:59) Like, they really want you to start with, like, a number. (3:01) Like, this is your have to tell it on day one.

Scott Benner (3:04) Like, this is my total daily insulin.

Jenny Smith (3:06) Right.

Scott Benner (3:06) That's why it's still coming up. (3:08) Mhmm. (3:08) Gosh. (3:09) I don't really remember that being a big part of management for us back then.

Jenny Smith (3:14) But No.

Scott Benner (3:15) Yeah. (3:15) I don't think about it much, honestly.

Jenny Smith (3:17) I think for kids, it might be or anybody going through a transitional time in life where their needs are changing, we pay attention I do, especially when I'm working with my kiddos. (3:29) I pay attention to total daily insulin because as their needs change and we can see things fluxing and we need to make adjustments, tracking their total daily insulin can be helpful to explain this is why you're seeing a higher blood sugar. (3:44) We're needing to increase. (3:46) You know, little Susie has grown an inch in the past three months.

Scott Benner (3:49) Mhmm.

Jenny Smith (3:50) This is why her insulin needs are this versus this. (3:53) So it's it's helpful just to acknowledge that you're not crazy that insulin needs are going up.

Scott Benner (3:59) Right. (4:00) So You know, it's funny too because people sometimes talk about that, like, you know, your your insulin should be 50% based on 50%. (4:09) I don't I don't really prescribe to that, really. (4:13) I don't see that being the case some days.

Jenny Smith (4:16) And no. (4:16) Really, you know, the pump that strives hard, which you know very well Yeah. (4:21) Having done all the Omnipod five episodes, that algorithm strives really hard to get somebody to about a fifty fifty. (4:28) Right. (4:28) But that's the algorithmic that's how it was written, coded to do, where with algorithm driven systems, especially in the DIY community, that fifty fifty, it it can kinda get thrown out the window a bit because of the give and take of the system for the way that the algorithm is written to work for you.

Scott Benner (4:48) Mhmm. (4:49) No. (4:49) I'm glad you said it because I was thinking that that might be an old metric, really. (4:53) Mhmm. (4:53) You know, that you don't see much more of.

Jenny Smith (4:55) But you hear it. (4:56) It's a great one to bring up because it's a metric that a lot of doctors

Scott Benner (5:01) They throw it around.

Jenny Smith (5:01) Still are hard lined in looking at. (5:04) And they're like, no. (5:05) No. (5:05) Something's gotta be off. (5:07) We have to throw in more basil here because, you know, you're you're only getting 30% when you should be getting a fifty fifty split.

Jenny Smith (5:13) And it's like then cleanup work on my part, teaching somebody. (5:17) It's kind of old school information.

Scott Benner (5:19) Right. (5:20) Okay. (5:20) Alright. (5:21) TDI oh, also TDI or TDD, why do people change things? (5:24) Like, why did some like, whatever was first, why did someone one day go, oh, it should be TDD or vice versa?

Scott Benner (5:30) Like, why do you gotta make everything hard? (5:32) Just Right.

Jenny Smith (5:32) Say the Keep it.

Scott Benner (5:33) Say the thing.

Jenny Smith (5:34) Alright. (5:34) Thanks. (5:34) Right.

Scott Benner (5:42) Hey, kids. (5:42) Listen up. (5:43) You've made it to the end of the podcast. (5:45) You must have enjoyed it. (5:46) You know what else you might enjoy?

Scott Benner (5:47) The private Facebook group for the Juice Box podcast. (5:51) I know you're thinking, oh, Facebook, Scott, please. (5:53) But no. (5:54) Beautiful group, wonderful people, a fantastic community. (5:58) Juice Box podcast type one diabetes on Facebook.

Scott Benner (6:01) Of course, if you have type two, are you touched by diabetes in any way? (6:05) You're absolutely welcome. (6:07) It's a private group, you'll have to answer a couple of questions before you come in. (6:10) We'll make sure you're not a bot or an evil doer, then you're on your way. (6:14) You'll be part of the family.

Scott Benner (6:16) Hey. (6:16) Thanks for listening all the way to the end. (6:18) I really appreciate your loyalty and listenership. (6:21) Thank you so much for listening. (6:23) I'll be back very soon with another episode of the Juice Box podcast.

Scott Benner (6:27) Hey. (6:27) I'm dropping in to tell you about a small change being made to the Juice Cruise 2026 schedule. (6:32) This adjustment was made by Celebrity Cruise Lines, not by me. (6:36) Anyway, we're still going out on the Celebrity Beyond cruise ship, which is awesome. (6:40) Check out the walkthrough video at juiceboxpodcast.com/juicecruise.

Scott Benner (6:45) The ship is awesome. (6:46) Still a seven night cruise. (6:48) It still leaves out of Miami on June 21. (6:51) Actually, most of this is the same. (6:53) We leave Miami June 21, head to Coco Cay in The Bahamas, but then we're going to San Juan, Puerto Rico instead of Saint Thomas.

Scott Benner (7:00) After that, Bastille. (7:02) I think I'm saying that wrong. (7:03) Saint Kitts And Nevis. (7:05) This place is gorgeous. (7:06) Google it.

Scott Benner (7:07) I mean, you're probably gonna have to go to my link to get the correct spelling because my pronunciation is so bad. (7:11) But once you get the Saint Kitts and you Google it, you're gonna look and see a photo that says to you, oh, I wanna go there. (7:18) Come meet other people living with type one diabetes from caregivers to children to adults. (7:24) Last year, we had a 100 people on our cruise, and it was fabulous. (7:29) You can see pictures to get at my link, juiceboxpodcast.com/juicecruise.

Scott Benner (7:34) You can see those pictures from last year there. (7:37) The link also gives you an opportunity to register for the cruise or to contact Suzanne from Cruise Planners. (7:42) She takes care of all the logistics. (7:45) I'm just excited that I might see you there. (7:47) It's a beautiful event for families, for singles, a wonderful opportunity to meet people, swap stories, make friendships, and learn.

Scott Benner (7:56) Have a podcast? (7:57) Want it to sound fantastic? (7:59) Wrongwayrecording.com.

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Scott Benner 12/19/25 Scott Benner 12/19/25

#1713 Mexican Sasquatch

Erin discusses becoming a teen mom, moving her family to Mexico, and managing her daughter's T1D diagnosis in a foreign country. She shares her husband's journey with Type 1, the challenges of accessing medical supplies abroad, and finding confidence through adversity.

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Scott Benner (0:0) Hello, friends. (0:01) Welcome to the Juice Box podcast. (0:03) From my family to yours, I want to wish you a happy holiday.

Erin (0:16) My name is Erin. (0:17) I am the mom to a seven year old daughter with type one diabetes and also have a husband that was diagnosed later in life with type one as well.

Scott Benner (0:27) If you'd like to hear about diabetes management in easy to take in bits, check out the small sips. (0:33) That's the series on the Juice Box podcast that listeners are talking about like it's a cheat code. (0:38) These are perfect little bursts of clarity, one person said. (0:41) I finally understood things I've heard a 100 times. (0:44) Short, simple, and somehow exactly what I needed.

Scott Benner (0:47) People say small sips feels like someone pulling up a chair, sliding a cup across the table, and giving you one clean idea at a time. (0:56) Nothing overwhelming, no fire hose of information, just steady helpful nudges that actually stick. (1:01) People listen in their car, on walks, or rather actually bolusing anytime that they need a quick shot of perspective. (1:08) And the reviews, they all say the same thing. (1:11) Small sips makes diabetes make sense.

Scott Benner (1:14) Search for the Juice Box podcast, small sips, wherever you get audio. (1:18) Please don't forget that nothing you hear on the Juice Box podcast should be considered advice, medical or otherwise. (1:24) Always consult a physician before making any changes to your health care plan or becoming bold with insulin. (1:31) The episode you're about to listen to was sponsored by Touched by Type one. (1:36) Go check them out right now on Facebook, Instagram, and, of course, at touchedbytype1.org.

Scott Benner (1:42) Check out that programs tab when you get to the website to see all the great things that they're doing for people living with type one diabetes. (1:49) Touchedbytype1.org. (1:51) Today's episode is also sponsored by the Tandem MOBI system, which is powered by Tandem's newest algorithm, Control IQ Plus technology. (2:00) Tandem Mobi has a predictive algorithm that helps prevent highs and lows and is now available for ages two and up. (2:07) Learn more and get started today at tandemdiabetes.com/juicebox.

Scott Benner (2:12) The podcast is also sponsored today by the Eversense three sixty five, the one year wear CGM. (2:20) That's one insertion a year. (2:22) That's it. (2:23) And here's a little bonus for you. (2:24) How about there's no limit on how many friends and family you can share your data with with the Eversense Now app?

Scott Benner (2:30) No limits. (2:32) Eversense.

Erin (2:33) My name is Erin. (2:34) I am the mom to a seven year old daughter with type one diabetes and also have a husband that was diagnosed later in life with type one as well. (2:42) Oh,

Scott Benner (2:43) we're gonna find out all about that. (2:44) First, we're gonna tell you that an hour ago before this started, I got a, an alert on my phone. (2:50) And because I was I had my headphones on, I was listening to something else that pops up and talks. (2:55) And it said that Aaron Rogers recorded the Juice Box podcast today at 12:30PM. (2:59) And I was like, I got Aaron Rogers on the podcast?

Scott Benner (3:02) I was like, finally, this thing's coming around. (3:04) It was you. (3:05) It just mispronounced Aaron.

Erin (3:06) Right.

Scott Benner (3:07) Yeah.

Erin (3:07) Yeah. (3:07) In the middle of football season.

Scott Benner (3:08) Yeah.

Erin (3:09) I'm sure that.

Scott Benner (3:09) For half a second, I was like, look at me going. (3:12) You know? (3:12) But you'll be better than he will be unless

Erin (3:15) I'm sure.

Scott Benner (3:15) Yeah. (3:15) Unless he comes on and talks about, like like, I don't know, sweat lodge retreats or whatever he ends up seeing me to talk about when he gets on the podcast. (3:23) Yeah.

Erin (3:25) I don't have I don't have that to talk about. (3:27) You don't have

Scott Benner (3:27) any idea of that? (3:28) Okay. (3:29) No. (3:29) No. (3:29) That's fine.

Scott Benner (3:30) No Ayahuasca in your life?

Erin (3:33) Nope. (3:33) Not not familiar.

Scott Benner (3:35) It's alright, Darren. (3:37) How let's see how we wanna do this. (3:40) How old are you now?

Erin (3:42) I am 44.

Scott Benner (3:43) Got married when?

Erin (3:45) At thirty thirty four. (3:47) Oh. (3:48) Yeah. (3:48) 34.

Scott Benner (3:48) First marriage?

Erin (3:50) Yes. (3:51) But each of us it was his second marriage and we each had a child before we got married.

Scott Benner (3:57) Okay. (3:58) So you had let's see. (3:59) You were 34 when you got married, but you weren't married. (4:03) So that was ten years ago. (4:05) Is that right?

Scott Benner (4:06) You got married?

Erin (4:07) Yeah. (4:07) Just about.

Scott Benner (4:08) So your your firstborn is I'm watch me guess. (4:11) Let's see how I do on this. (4:12) 25.

Erin (4:15) Oh my goodness. (4:15) Yeah. (4:16) She is. (4:16) Goddamn. (4:17) I can't believe you.

Erin (4:18) Erin, take

Scott Benner (4:19) a second.

Erin (4:19) Because I was a very young mom, so that that's not usually the guess.

Scott Benner (4:24) Erin, why are you talking over my dancing? (4:26) I'm dancing. (4:27) Hold on a second.

Erin (4:28) I did it. (4:29) I did it. (4:30) I did it. (4:30) I did it.

Scott Benner (4:31) That's for all of you that think generalizing isn't okay. (4:35) Right. (4:36) It's works. (4:37) It works. (4:39) You know, I mean, like, it doesn't work every time.

Scott Benner (4:41) And sure, once in while, you end up hurting somebody's feelings. (4:43) But for the most part, there's a reason why things happen. (4:46) Look at me figuring that out. (4:47) Oh, I feel like a genius right

Erin (4:48) That's crazy.

Scott Benner (4:50) Don't you think we should end the episode?

Erin (4:51) 25.

Scott Benner (4:52) Oh, don't you think we should just end it right here? (4:55) Done. (4:56) Rob should put in that ta da music. (4:58) Ta da. (4:59) And then it should just end.

Scott Benner (5:01) Like, a magic trick was performed. (5:02) Alright. (5:03) So oh, god. (5:03) I really do feel good about myself.

Erin (5:07) You're welcome.

Scott Benner (5:08) And your, your husband, he he was married before. (5:11) He went a little more traditional, came in with a kid too. (5:14) You have a step son, daughter, like that?

Erin (5:16) Stepdaughter. (5:17) Yeah. (5:17) They're all girls.

Scott Benner (5:18) Okay. (5:18) Nice. (5:20) And then y'all have a kid together how long ago?

Erin (5:24) We have two. (5:26) So one is 11 and the other is seven.

Scott Benner (5:29) 11 and seven. (5:30) I said y'all, which is weird because that's not a phrase I use, but nevertheless wait. (5:35) And you have four girls?

Erin (5:36) Four girls. (5:37) Yeah. (5:37) Two in the home and two older, but, yeah, four girls.

Scott Benner (5:41) Erin being clear that if all five of us live together, I wouldn't be this calm, probably.

Erin (5:47) No. (5:49) Yeah. (5:49) It it's it can be a lot. (5:51) It

Scott Benner (5:51) can be a lot.

Erin (5:52) We're hanging in there.

Scott Benner (5:53) Alright. (5:54) So the 11 and the seven year old, one of them gets type one diabetes. (5:57) How long ago?

Erin (5:58) April. (6:00) Oh. (6:00) So it's been about a year and a half.

Scott Benner (6:02) And it was the younger one or the older one?

Erin (6:04) The younger one. (6:05) Mhmm.

Scott Benner (6:05) Okay. (6:06) So she's about six when it happened.

Erin (6:07) Yep. (6:08) She had just yeah. (6:09) She was newly six.

Scott Benner (6:10) Okay. (6:10) And her dad, who we could also call your husband.

Erin (6:13) Yes.

Scott Benner (6:14) He was diagnosed when?

Erin (6:16) He was 29 or 30. (6:19) So it was right about the time that we started dating, right before we started dating. (6:23) But he had the typical kind of story where he was diagnosed as type two. (6:28) It kinda lingered for a while and finally was diagnosed with type one.

Scott Benner (6:34) Did that impede your courtship at all?

Erin (6:36) No. (6:37) But he dealt with it a lot different than, you know, at the beginning of his diagnosis than we are dealing with my daughter's because his was kind of it wasn't clear what it was. (6:49) I mean, I guess it could have been, but they didn't. (6:51) They treated it like type two.

Scott Benner (6:53) He had a missed a misdiagnosis with type two for a little bit.

Erin (6:55) Yeah. (6:56) Yeah. (6:56) So it was it was completely different, and it didn't hit him as hard and fast as, you know, like, my seven year olds.

Scott Benner (7:04) Do you think he had Lada or a slow onset of some kind?

Erin (7:07) I think so. (7:08) Yeah. (7:08) They they said type one and a half, which I guess

Scott Benner (7:11) is Lada.

Erin (7:12) Kinda what they call that. (7:13) So yes. (7:14) Yeah.

Scott Benner (7:15) Okay. (7:15) How about

Erin (7:16) And even

Scott Benner (7:16) his Go ahead.

Erin (7:17) Management now is it's so much easier than my daughter's. (7:20) It's like I don't know. (7:22) He he manages it the same way. (7:24) It's just a little bit easier.

Scott Benner (7:25) Does he have outcomes that are, similar to hers?

Erin (7:28) They're better with less effort, I feel like, unless he just got really good at it. (7:32) But he's also on a GLP one medication that helps a lot.

Scott Benner (7:36) That'll help.

Erin (7:37) Yeah. (7:37) His management, it seems I I'm not the one managing him, so I I can't speak for him, but it does seem like it he has a better outcome with less effort.

Scott Benner (7:46) Does this give you the horrible feeling that he's better at type one than you are? (7:52) No. (7:53) No. (7:53) Good. (7:53) Because it shouldn't.

Scott Benner (7:54) I was just wondering if you No. (7:55) Were walking around feeling that way.

Erin (7:57) No.

Scott Benner (7:57) Okay. (7:57) Good.

Erin (7:58) It doesn't.

Scott Benner (7:58) Have you ever tried letting him manage your daughter and you managing him to see what would happen? (8:04) No. (8:04) That'd be awesome.

Erin (8:05) There's been there's been times, not very often that I've been I've been gone away from them, and he manages her, but I still have the follow-up and kind of the same things are happening.

Scott Benner (8:16) Same struggle.

Erin (8:17) Yeah.

Scott Benner (8:17) Okay. (8:18) Well, mean, in fairness, he doesn't have growth hormone going on. (8:20) He's not you know, there's things happening for your daughter that aren't happening for him, I would imagine.

Erin (8:25) Right. (8:26) Yeah. (8:26) I can understand why it happens, but, yeah, it but it gives me hope for her future that it's not always gonna be and it's not always hard, but

Scott Benner (8:34) Yeah.

Erin (8:34) You know, it's not always gonna be as time consuming almost, I guess.

Scott Benner (8:38) I take your point. (8:39) His side of the family, his children that aren't your children, his mom, like, going back that way. (8:45) Other autoimmune stuff?

Erin (8:47) Yeah. (8:47) His family's full of it. (8:50) His his dad's side of the family completely. (8:52) His his paternal grandmother was rheumatoid arthritis. (8:56) Both his dad and sister, thyroid issues, and his niece on that side too has already been tested for Hashimoto's.

Erin (9:04) So there's a lot of autoimmune going on on that side of the family.

Scott Benner (9:08) Do you ever wonder if a few generations ago, if all the old ladies who had stiff wrists just would've got a dog instead of got married if there'd be as much type one diabetes today?

Erin (9:16) I haven't thought about that, but there probably would not be.

Scott Benner (9:19) My wrist hurts. (9:21) That means get a dog. (9:22) What if that what that was what if that was the case? (9:25) So many of those, like, tell me about your family line stories somehow incorporate a grandmother with RA.

Erin (9:33) Yeah. (9:34) Really interesting. (9:34) Yeah. (9:34) And I never I never thought about that when we started, you know, having children. (9:39) But, yeah, it wasn't even something that crossed my mind.

Erin (9:42) And I have a medical background, but still it didn't even I didn't even think about it.

Scott Benner (9:46) You have a medical background? (9:48) You work at the place that makes band aids? (9:49) What do you do?

Erin (9:50) I I did. (9:51) I was a licensed vocational nurse. (9:53) So, like, actually, my last job that I had before moving out of the country was I worked at the school district, so I help kids with diabetes every day. (10:02) But

Scott Benner (10:03) Wait. (10:03) You got kicked out of the country or you or you left? (10:05) No. (10:06) What what happened?

Erin (10:07) No. (10:07) I didn't. (10:08) I guess that's a real question right now, but no. (10:09) I didn't. (10:10) I we moved to Mexico.

Scott Benner (10:12) Oh, do you live there now?

Erin (10:14) We do.

Scott Benner (10:14) Yeah. (10:15) Oh, and now I'm gonna have more questions. (10:16) Oh, good. (10:17) I'm having fun. (10:17) I don't think we should let much more of the podcast go without pointing out just one last time that I picked your daughter's age completely out of just randomness.

Scott Benner (10:25) Yeah. (10:25) I don't know what we're we we should call this episode The Great Kreskin, but find out what Kreskin mean. (10:30) Like, how how

Erin (10:31) would remember what that word is.

Scott Benner (10:32) How would it be said I know you're too young. (10:34) But how would it be said in Mexico? (10:36) And that'll be the title. (10:37) I'll figure all that out later.

Erin (10:40) The I don't know.

Scott Benner (10:42) Erin's like, listen. (10:43) Can we just get back to the diabetes thing I got shit to say? (10:46) Okay?

Erin (10:47) No. (10:48) You're fine. (10:49) That was that was pretty incredible. (10:51) I will admit.

Scott Benner (10:53) Your pause, like, I was like, either she's a sarcastic person and she's about to come back and sing me because I'm like her kid's nine or something like that and I'm way off, or she's generally out of her mind right now just going like, oh my god. (11:07) Like, he got it exactly right. (11:10) And I and then I was afraid it was gonna be like, oh, she's 26, but you said 25. (11:14) Because it doesn't feel the same if I missed the number Anyway No. (11:17) Yeah.

Scott Benner (11:18) Yeah. (11:18) Do you wanna know how I did it?

Erin (11:21) Yeah. (11:21) I

Scott Benner (11:21) would. (11:22) So I took your age. (11:23) I took off 10. (11:24) That gave me 34. (11:25) Then Okay.

Scott Benner (11:26) I sorry. (11:28) And then I said, okay. (11:30) You never got married, so you probably got you probably got pregnant younger. (11:34) Uh-huh. (11:35) And then I was like, okay.

Scott Benner (11:37) Let me just knock off another 10 to make it, like, you know, like, get me back down. (11:42) Now I've got you at 24. (11:43) That's not a get pregnant by mistake age.

Erin (11:48) Right.

Scott Benner (11:48) Right. (11:48) So then I just knocked off five more years, then I said 25.

Erin (11:53) You did that quickly.

Scott Benner (11:56) Well, you know, when you're willing to generalize about people, it really is easy to jump to conclusions. (12:02) So with dumb luck. (12:05) I'm sorry. (12:05) Okay. (12:06) So there's a bunch of autoimmune on your husband's side of his family.

Scott Benner (12:09) Did it translate to his children who aren't also your children or no?

Erin (12:12) No. (12:13) His daughter, as far as we know, no. (12:16) Okay. (12:17) No autoimmune.

Scott Benner (12:19) And tough question. (12:19) If you knew all this was gonna happen, would you have just swiped again on your app and gone to a different guy, or how do you feel about that in hindsight?

Erin (12:28) No. (12:29) I don't think so. (12:30) Okay. (12:30) No.

Scott Benner (12:31) Interesting. (12:31) I'm I'm always interested. (12:32) I don't think there's a

Erin (12:33) Yeah. (12:34) I don't

Scott Benner (12:34) think there's a wrong way to answer that question. (12:35) I do think there's a more acceptable way to answer

Erin (12:38) Yeah. (12:39) I thought about it.

Scott Benner (12:40) Did you?

Erin (12:41) Yeah. (12:41) In hindsight, I have I have thought about it a little bit, but

Scott Benner (12:44) Tell me Yeah. (12:45) Tell me what that means that you've thought about it.

Erin (12:48) Well, just knowing what I know now, like I said, I had the medical background and I could've I knew, like, his his grandma had RA, and I knew it was an autoimmune Mhmm. (12:59) Disease, but I never put the two together that if we ever had children, the possibility of of having autoimmune issues or diabetes was higher. (13:09) Like, I just didn't think about that.

Scott Benner (13:10) No. (13:10) Of course not.

Erin (13:10) And I don't think my decision would have changed, but I would have I would have thought about it more Yeah. (13:16) I think.

Scott Benner (13:17) A little, like, devil pops up on your shoulder and says, hey. (13:20) I don't know if you realize this, but if you marry that guy, you have a whatever percent chance more of one of your kids having an autoimmune issue. (13:27) You would have been like, oh, that's not gonna happen. (13:29) I'll be okay. (13:31) This episode of the Juice Box podcast is sponsored by the Eversense three sixty five.

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Erin (15:42) Yeah. (15:42) Well or we could have had the conversation. (15:44) We each had a child already. (15:45) Maybe we could have had a conversation. (15:47) Do we want to bring more children into the world with with that risk, knowing the risk?

Scott Benner (15:51) What's the thing that happens there after people, like, build a little bit of a family, dovetail into a new family? (15:57) Does it feel like your relationship's not as real if you don't have your own kids? (16:02) Is there a pressure about that?

Erin (16:04) I don't think so.

Scott Benner (16:05) No? (16:06) Okay.

Erin (16:06) No. (16:07) I didn't I didn't feel that way, but I did want more children. (16:10) I kind of I obviously had my other daughter so young that my parenting experience, at the beginning, was was not the typical parenting experience. (16:20) So I kinda wanted to experience that, but I don't think I felt like I needed to bring our own children into the world to to make it a legit marriage.

Scott Benner (16:27) Yeah. (16:27) Yeah. (16:27) Yeah. (16:28) I I don't know. (16:28) I would just ask questions.

Scott Benner (16:29) I don't really have any thoughts about that. (16:31) Yeah. (16:31) How was your parenting experience different being a single younger mother versus now?

Erin (16:37) I was so young that I think it was it was almost easier because I didn't I was so naive that I didn't know all the bad things that could happen in the world almost. (16:48) She was born with a medical condition that was called gastroschisis. (16:53) So her intestines and actually her actual stomach were formed outside of her body, And so she had surgery right when she was born. (17:01) It's just something that happens. (17:03) It's not genetic.

Erin (17:04) It's not, like, passed down, but it often happens to younger mothers, which is odd. (17:10) But I think if that would have happened with one of my my children now, my younger children, I was older and knew real risks. (17:19) When I was 19 years old, I almost was so naive that I was everything's gonna be fine. (17:23) The doctors know everything. (17:25) Everything's gonna be fine.

Erin (17:26) But I think if it would have happened to one of my younger children, I think I would have been much more of a a mess.

Scott Benner (17:31) Seeing the world a little differently. (17:33) Back then, you're like, oh, they're gonna stuff it all inside and it's gonna be cool.

Erin (17:36) I I mean, kind of. (17:37) It wasn't yeah.

Scott Benner (17:38) Yeah. (17:38) Yeah. (17:38) I know somebody who was born with that, by the way.

Erin (17:41) Oh, really?

Scott Benner (17:42) Yeah. (17:42) It crazily enough. (17:43) Are there ongoing issues from that, or is that a thing that's taken care of and doesn't cause her any issues?

Erin (17:49) No. (17:49) It's a thing, luckily, that was taken care of. (17:51) They said, you know, at some point, she could develop some scar tissue from the surgery, but so far, it hasn't it hasn't caused any issues. (17:58) It just required the one surgery and a hospital stay for a few weeks, which was it was hard, but like I said, I was so young. (18:05) I it wasn't as traumatic.

Erin (18:06) It's I think it would have been now, which doesn't make it any more, like, serious. (18:11) It was just like I said, I was 19 and and very naive, so I think I handled it better than I would have.

Scott Benner (18:17) Because you're just like, woah. (18:18) It's gonna be fine. (18:20) Yeah.

Erin (18:20) Never did. (18:21) And it was, but

Scott Benner (18:23) Yeah. (18:24) Were you together making decisions with her father, or was it not even that close?

Erin (18:28) Yeah. (18:29) We were together for the first year of her life. (18:32) So yeah. (18:32) And he had a job where he would get off of work at, like, two in the morning, and I would pick him up from work, and we would go to the hospital and visit her. (18:39) I mean, we were visiting her probably more than any other parents were because we could stay awake at night because we were so young.

Erin (18:46) We we were there all the time. (18:48) But, yeah, we we did make decisions together at that time.

Scott Benner (18:51) Very cool. (18:52) Okay. (18:53) It's like an after school special at the beginning of your life.

Erin (18:56) Yeah. (18:56) It was yeah. (18:57) I had a very typical childhood, and then I I went to Catholic school from kindergarten to eighth grade, like a private Catholic school, and then I got sent to the big public school in high school and kind of I didn't go pray I didn't go crazy, but, you know, I I all the time, I got pregnant.

Scott Benner (19:11) By by way, my generalizations are coming full circle today. (19:13) Have you have you heard me talk about this in the podcast? (19:15) Like, every girl every girl I know that went to Catholic school, like, soon as they graduated, they, like, either cut their hair or grew their hair. (19:22) Like, they did something to, like, change the from the conformity that they were kinda stuck into. (19:27) You apparently went out a lot.

Scott Benner (19:29) Is that what happened?

Erin (19:30) Well, I didn't get pregnant till after high school. (19:34) I graduated high school, but I did yeah. (19:36) I just it opened up the world, you know.

Scott Benner (19:39) Yeah. (19:39) Did you feel compressed? (19:40) And then when it was shown to you, was it exciting Or what or did it feel like, I can't believe I didn't know all this existed? (19:47) Like, what what's the allure? (19:49) We're gonna get to the diabetes next, but this is interesting.

Scott Benner (19:51) No. (19:52) Yeah.

Erin (19:52) Yeah. (19:52) It was. (19:52) I didn't feel, like, sheltered or compressed when I was at the Catholic school. (19:56) I I really liked it. (19:58) But when I went to the public school and there's all kinds of different people Mhmm.

Erin (20:02) I met really fun people, and I had I had fun.

Scott Benner (20:06) This story about weed, or what are we saying exactly?

Erin (20:10) No. (20:10) No? (20:10) No. (20:11) No. (20:11) No.

Erin (20:11) I mean, I did do that too a little bit, but, I mean, everyone in my high school did for the most part, even, like, the good kids. (20:17) But now I was just meeting I went to the school where I had the same 30 people in my class for years and then going to the big school where I had 30 people in six different classes every day.

Scott Benner (20:30) Yeah. (20:31) I'm so, lost in my own head right now imagining people listening and and seeing them in, like, two different camps. (20:37) Like, the camp that's like, see, she would have just stayed in Catholic school. (20:40) She would have been okay. (20:41) And the people who are like, see, if you would have exposed her to the world sooner, she maybe wouldn't have been so, like, enamored with it or whatever.

Scott Benner (20:49) Like

Erin (20:49) Yeah. (20:50) No. (20:50) I I don't think I was doing anything different than

Scott Benner (20:52) Anybody else.

Erin (20:53) I would have done in Catholic school. (20:55) Yeah. (20:55) I wasn't being irresponsible. (20:57) Like, I was on birth control. (20:59) I was being responsible, and even all my friends from Catholic school, they were doing the same exact thing.

Scott Benner (21:04) This boy was able to get it through the birth control? (21:08) Like a superhero. (21:09) Look at that.

Erin (21:09) Oh my goodness. (21:11) But looking back, I probably didn't take it as

Scott Benner (21:14) Every day.

Erin (21:15) I I no. (21:15) I took it every day, but different times of the day, I was on antibiotics. (21:20) At times, I had really bad urinary tract infections.

Scott Benner (21:23) It was from all the sex, Erin.

Erin (21:25) No. (21:25) I had no.

Scott Benner (21:26) Wasn't the business

Erin (21:27) for me.

Scott Benner (21:27) I'm just teasing. (21:28) I'm sorry. (21:29) Well, one way or the other, got a nice kid. (21:33) Oh my god. (21:33) She is a nice kid.

Scott Benner (21:34) Right? (21:34) Like, she's not a big disaster. (21:36) No. (21:36) Okay. (21:37) No.

Erin (21:37) She's good. (21:38) She's great. (21:38) Awesome. (21:39) Wonderful. (21:40) That's awesome.

Scott Benner (21:40) Awesome. (21:41) Okay.

Erin (21:41) Thankfully.

Scott Benner (21:42) Yeah. (21:43) Right? (21:43) Because you're trying to decide, like, what would have been worse if she ended up like me or like him or like you don't do you have contact with him still? (21:51) So interested.

Erin (21:52) Not directly, but so my it's gonna get crazier, but my my oldest daughter, the 25 year old, she just had a baby, so I am now a grandma. (22:00) And so we were I I visited recently, and he was he was there. (22:05) So, I mean, we we get along just fine, but I wouldn't, like, reach out to him just

Scott Benner (22:09) to No. (22:10) No. (22:10) I I take Yeah. (22:11) Your But it's is it a little weirder because you're not old? (22:14) Like, you know what I mean?

Erin (22:14) I think he looks older than me. (22:16) So

Scott Benner (22:17) Oh, he's not holding up. (22:18) Is that what you're saying?

Erin (22:19) No. (22:20) He's he's fine. (22:20) I'm

Scott Benner (22:21) just I'm happy just you got away from him because he looks super old.

Erin (22:24) It is it is a little odd being a grandmother at this age and having a seven year old at the same time. (22:32) And her baby, I mean, she had her when she was 24 and it was planned and, you know, it's completely different experience. (22:37) But

Scott Benner (22:38) Yeah. (22:38) Her issue get in the way of the baby at all? (22:40) Anything with that cause

Erin (22:42) her? (22:42) No.

Scott Benner (22:43) Good for her.

Erin (22:43) She had a a completely normal pregnancy and and childbirth and everything. (22:47) So that was it was good.

Scott Benner (22:49) I didn't wanna tell you that the person I know that had the the same problem

Erin (22:52) Yeah.

Scott Benner (22:53) You know, probably happened twenty years before your daughter's. (22:55) Obviously, they didn't do it as well back then. (22:57) He had a lot of scar tissue from it, and it was problematic throughout his life. (23:02) So Okay. (23:02) Yeah.

Scott Benner (23:03) I'm happy for your daughter that didn't happen to her. (23:05) Okay. (23:05) Alright. (23:06) You've done enough. (23:06) I appreciate what you've given to the podcast.

Scott Benner (23:08) We'll now move forward. (23:10) Your daughter is showing signs. (23:13) Does your husband see it first? (23:15) Do you see it? (23:15) Like, how how does it kinda creep up

Erin (23:17) on you? (23:18) It happened quick, and I saw it first. (23:22) My husband was actually in Mexico. (23:24) We live in the Cabo area. (23:26) Mhmm.

Erin (23:27) And he was so the story or the schedule goes, we signed a lease for our house here in Mexico in April 04/01/2024. (23:35) She was diagnosed April 24. (23:38) So he was actually in Mexico kind of moving some stuff down to the house. (23:43) He was here for about a week, and she always goes to bed with a water bottle, you know, just by her bedside. (23:50) She came down in the middle of the night one one night and asked for a refill, it's like a 30 ounce YETI water bottle.

Erin (23:55) And immediately, was like, oh, no. (23:58) But I filled up her water bottle and and kind of went on with her life. (24:03) But over the next couple days, she was showing that really extreme thirst, and then she had two bedwetting accidents. (24:09) Like, oh, no. (24:10) But I, in my mind, was like, no.

Erin (24:12) It's not it. (24:13) I'm just really overthinking it because I know too much. (24:16) And she had a normal physical schedule a couple days after she wet the bed the first time. (24:21) She said, okay. (24:22) I'll just bring it up at the appointment.

Erin (24:24) Mhmm. (24:24) And I'm so thankful that I had that appointment scheduled because I don't know that I would have taken myself seriously until it got bad.

Scott Benner (24:32) Okay.

Erin (24:32) I really doubted myself and and thought I was overthinking things. (24:37) And the only glucometer that we had in the house, my husband had in Mexico. (24:42) Like, we didn't have a ton of extras. (24:44) He had one, and that was that was it. (24:47) Oh.

Erin (24:48) So I think I maybe would have pricked her finger, but she would have really freaked out if I told her I had to prick her finger with a needle at that time. (24:55) So looking back, I don't even know that I would have made that decision.

Scott Benner (24:58) Okay. (24:59) Do you think you were having trouble talking yourself into believing she had type one or talking yourself into being brave enough to hear the answer?

Erin (25:08) I think probably both.

Scott Benner (25:09) Okay. (25:10) Yeah. (25:12) But it got to you at some point. (25:13) How long until that appointment popped up?

Erin (25:16) I think it was six days from the day that she woke me up in the middle of the night for extra water

Scott Benner (25:23) Yeah.

Erin (25:23) Until the appointment.

Scott Benner (25:24) Did doctor take you seriously when you said, hey, I think?

Erin (25:28) Yes. (25:28) Yeah. (25:29) Thank goodness. (25:29) So she was going on about the normal, you know, normal questions and, you know, if I had any concerns. (25:35) And it was the first time I had seen this doctor, so we had no relationship with her at all.

Erin (25:38) I told her my concerns and I also said my husband also has type one diabetes so she said let's, you know, prick her finger and we'll get a urine sample. (25:47) They did that and the rest of the appointment was done. (25:50) They pricked her finger and it was 304. (25:52) I just remember looking at it, I had to turn around and put my back towards my daughter so I could let it tear out real quick and then get it together, turn back around.

Scott Benner (26:01) Like, where does the tear come from? (26:03) Does it come from her life's not gonna be as perfect as I hoped or I have knowledge of what type one diabetes is and here it comes? (26:11) Like, is it somewhere in the middle? (26:13) Do you remember what the overwhelming feeling was like at that moment?

Erin (26:16) I think it was just because I had I had that suspicion in the back of my mind anyway. (26:20) Maybe not even in the back, in the front of my mind Yeah. (26:23) And just seeing that number, instantly, knew that suspicion was true. (26:27) So all the other things didn't really flood my mind, but I I just

Scott Benner (26:31) Emotion.

Erin (26:32) Yeah. (26:32) It was just

Scott Benner (26:33) When did the other things get to when do you start thinking about the other parts?

Erin (26:36) On the drive to Children's Hospital, they sent us there. (26:40) I think on the drive, I had to text my husband and I just said, Dylan has type one diabetes. (26:47) You probably need to come home. (26:48) He was scheduled to come home the next day anyway, but I was just like, can't do this by myself. (26:54) I called my mom and and asked her to go to the children's hospital with me because I was I knew it was gonna be emotional, and I I just I didn't know how I was gonna handle it.

Erin (27:04) I knew I needed to keep it together, and I did. (27:06) But I just at that time, I wanted my mom to.

Scott Benner (27:09) Yeah. (27:09) No kidding.

Erin (27:10) So she came with me. (27:12) And luckily, we went to Children's Hospital Los Angeles, and we got there at, gosh, like one in the afternoon, and we were out of there by 6PM.

Scott Benner (27:23) Really? (27:23) Because she wasn't in DKA, obviously, but because

Erin (27:27) She wasn't. (27:27) No. (27:28) And I was trying to push for the least traumatic experience for her.

Scott Benner (27:33) Okay.

Erin (27:34) And I said, we can do this, I said, I have the knowledge. (27:38) I said, I don't know everything, but I know enough where I I can do what I need to do to keep her alive until we get this situated. (27:45) I said, but if we are admitted to the hospital and she gets an IV and, you know, all these tubes and all these people, I said, she's gonna freak out. (27:52) I mean, any kid would, but this kid in particular would.

Scott Benner (27:56) Do you think they were comfortable with that because your husband has type one?

Erin (27:59) I think that and then also my job at the time was at the at the school district dealing with kids with diabetes every day.

Scott Benner (28:07) Have background.

Erin (28:08) So I, yeah, I told them that too. (28:10) But I think probably my husband was

Scott Benner (28:13) Yeah.

Erin (28:14) More of a driving factor than than my job.

Scott Benner (28:17) He had a great sense of humor when you texted him and said, Dylan has type one diabetes. (28:22) I need you to come home. (28:22) He would have responded back in Spanish, and and it just would have said, I'm sorry. (28:28) Have the wrong number.

Erin (28:29) You have the wrong number.

Scott Benner (28:32) It would have been funny. (28:33) Like, retrospect, not not right at the moment. (28:35) But Yeah. (28:36) You'd have been like, oh, I knew this one was a problem. (28:38) Okay.

Scott Benner (28:39) Did they give her a CGM leaving the hospital?

Erin (28:41) They did. (28:42) Yes. (28:42) So she came home with a Dexcom g seven, and then she was MDI for a couple months. (28:48) I had to really push for her to get a pump before we moved, so we moved officially July 1 of that same year. (28:55) They don't have the same supplies available here.

Erin (28:59) Of course, they have insulin, and they do have an insulin pump. (29:01) I don't know which one it is, but we chose Omnipod five just because we knew she was gonna be swimming and active here in a different way. (29:10) But I really had to push for us to get, like, the training scheduled and everything before we left so that we could get all the supplies we needed before we were here.

Scott Benner (29:18) Yeah. (29:19) I'm sorry. (29:20) You moved for business for a job?

Erin (29:23) So, yeah, our family yeah. (29:25) Our family's in doing construction down here and then, fishing charters.

Scott Benner (29:29) Okay. (29:29) Alright. (29:30) And but you are a US citizen, so getting the ION POD five is not a problem, but it was easier when you were at home.

Erin (29:37) Right.

Scott Benner (29:37) Gotcha. (29:38) Will you stay there forever? (29:39) Are you gonna stay there for the length of the of the construction job?

Erin (29:43) That's where we are here indefinitely.

Scott Benner (29:46) Yeah. (29:46) Do you, speak Spanish?

Erin (29:49) Not fluently. (29:50) I'm getting better.

Scott Benner (29:50) Does it matter?

Erin (29:52) Where we are? (29:53) No.

Scott Benner (29:54) Alright.

Erin (29:55) No. (29:55) It's a very touristy place, so, pretty much everyone speaks English. (30:00) I wish it was a little more

Scott Benner (30:02) Low phone.

Erin (30:03) Spanish, then I'd be forced to Yeah. (30:04) Speak a little bit more, but but I but I'm getting better.

Scott Benner (30:07) How's the humidity?

Erin (30:09) Better now. (30:10) During the summer months, like, it's just getting better now. (30:13) But, like, June to middle, October, it's bad.

Scott Benner (30:17) It sounds like five months. (30:18) Five months. (30:19) Yeah. (30:19) I won't be coming. (30:20) I was gonna offer to come down, but, now I won't that you told me there's humidity for five months.

Erin (30:25) October to March is fantastic.

Scott Benner (30:27) Can I come October? (30:28) Wait. (30:29) Hold on. (30:29) October, November, December, January, February, March. (30:31) Six months I can make it?

Scott Benner (30:33) Yeah. (30:34) Alright. (30:34) I'm on my way. (30:35) Build me a house. (30:36) Are you guys building houses right now?

Scott Benner (30:37) Is that what's going on?

Erin (30:39) They're not in construction yet. (30:40) Oh. (30:40) Well, come They will

Scott Benner (30:41) be I mean, I'm

Erin (30:42) We'll have a condo for you.

Scott Benner (30:43) I'm pretty old. (30:43) Can you hustle a little?

Erin (30:46) Coming right along.

Scott Benner (30:47) I mean, Jesus. (30:48) How long you've there? (30:49) Six months already? (30:50) Chop chop. (30:51) I guess there's probably still public officials to bribe and stuff like that.

Scott Benner (30:54) You're probably just getting through that part right now.

Erin (30:56) I mean, do. (30:58) Yeah. (30:59) Things are a little different here and and move a little bit slower sometimes, but my husband's family was in construction back in The States too, and it it didn't move any faster, really.

Scott Benner (31:09) I'm I'm teasing. (31:10) You comfortable there? (31:11) You feel comfortable, safe, all that stuff?

Erin (31:14) I do. (31:14) Yeah. (31:15) There's a lot of families just just like us. (31:17) Yeah. (31:18) That I've

Scott Benner (31:19) Where do the kids go to school now?

Erin (31:21) They're in a private school. (31:22) It's a dual immersion school, so they have half their day in English and half in Spanish.

Scott Benner (31:27) Nice. (31:28) Is she is she picking it up quickly? (31:29) Are the kids picking it up fast?

Erin (31:31) Yeah. (31:32) So they're they went to a charter school. (31:34) We were from California back in California that had the same kind of model. (31:37) So my my older daughter's pretty fluent already even before we moved here. (31:41) Mhmm.

Erin (31:41) But my little one, Dylan, the one with diabetes is picking it up picking it up now.

Scott Benner (31:46) Good. (31:46) Nice. (31:47) How is she dealing with the diagnosis starting from the hospital? (31:51) Like, was there any comfort? (31:52) Like, daddy has this.

Scott Benner (31:53) You I'm sure you yanked that one out pretty quickly. (31:55) Like, oh, just like daddy. (31:57) Did that help her feel any more comfortable or not really?

Erin (32:00) Not really because his the

Scott Benner (32:02) way Kinda quiet.

Erin (32:03) Earlier, the way yeah. (32:04) And he just kind of did it. (32:06) She knew about it, but she didn't really know what it was. (32:10) So it helps a little bit. (32:11) He had a Dexcom at the time too, so she knew what what it was.

Erin (32:16) She was newly six. (32:17) She was pretty little, but not as young as some some other ones, but she didn't know she didn't know a whole lot. (32:24) She was terrified of getting injections like I'm sure a lot of a lot of kids are at first. (32:29) That was one thing that we had to do before we left the hospital. (32:32) They had to see that she would let me give her an insulin injection.

Erin (32:35) He said if you she won't let you do this, we can't let you leave because she needs her insulin. (32:41) So this kid was screaming and crying, ready to run out the exam room that we were in. (32:47) So that was that was the hardest part.

Scott Benner (32:49) How has it changed your relationship between you and her?

Erin (32:52) She was always very attached attached to me. (32:55) It for a while, it became became worse. (32:58) Almost she was really, really attached to to me. (33:01) Mhmm. (33:01) But I'd say in the last six months or so, she's become like a new kid.

Scott Benner (33:06) Oh, how?

Erin (33:08) I think she became more comfortable here where we're living. (33:10) She made some really good friends, and I think it really just boosted her, maybe her self esteem or maybe her confidence in herself, and they really accepted her diagnosis. (33:19) Not that she had kids that didn't before, but they understood it and would kind of watch out for her a little bit. (33:25) Mhmm. (33:25) We've made some really good friends, like, with the kids' families, so I'm comfortable leaving her with you know, some of the parents, they kinda know what to do.

Erin (33:34) Yeah. (33:34) They don't know a lot about it, but they know enough to to keep her safe while they're there. (33:39) And I don't know. (33:40) She's just really blossomed.

Scott Benner (33:41) That's awesome.

Erin (33:41) The last I'd say it's about six months.

Scott Benner (33:43) I didn't think you were gonna say friends. (33:44) That's great. (33:45) I thought you were gonna say she got a little more comfortable with the diabetes, but that's really that's lovely.

Erin (33:49) Yeah. (33:50) I think just becoming comfortable. (33:52) She had a really hard time adjusting here at first. (33:54) I mean, it was a lot of changes. (33:55) She was diagnosed, and we moved to Mexico.

Erin (33:59) I mean, it was a lot going on.

Scott Benner (34:00) No. (34:00) Really. (34:01) You're like, hey. (34:01) You have diabetes now. (34:02) Also, we're leaving the country.

Erin (34:04) So Yeah. (34:05) And I yeah.

Scott Benner (34:06) And have I told you about the humidity? (34:08) Yeah.

Erin (34:10) We moved July 1, which is, yeah, kind of the hottest, most humid time that you can move. (34:16) But the kids were starting school in August, you know,

Scott Benner (34:19) it's had to get there.

Erin (34:20) Had to do. (34:21) But Yeah. (34:21) That was one thing too that immediately crossed my mind. (34:24) It's like, we we can't move. (34:26) You know, as soon as she was diagnosed, I was like Oh.

Erin (34:29) Our plans need to change.

Scott Benner (34:31) And your husband went, what's that now? (34:34) Because I got, wait. (34:35) What? (34:35) No. (34:36) We're going.

Scott Benner (34:36) He

Erin (34:39) said, no. (34:39) They don't. (34:40) I just didn't know how that was gonna gonna work, but we we've made it work. (34:45) It's been challenging at times, but it's, like I said, we've we've we've managed.

Scott Benner (34:49) Tell me more about that though. (34:50) So, you know, you it's a big change. (34:53) I'm not making fun of it. (34:54) Like Yeah. (34:55) Uprooting your family and moving out of the country is a is a big thing to do.

Scott Benner (34:58) And your kid's diagnosed right before that, you have the feeling like, hey, we can't go, but there's obviously business reasons why you you have to go. (35:06) Right. (35:07) Like, what got you through that or what happened that you saw or was it just necessity?

Erin (35:12) Well, at first, it was just necessity, but I came to terms with it pretty quickly. (35:17) I just kind of had to sit down and think of the logistics of it. (35:19) So, like, getting our supplies. (35:21) They don't have Dexcom here, and they don't have Omnipod five here. (35:25) I was thinking how are we gonna get these supplies from The States here.

Erin (35:30) I just really had to kind of put it on paper almost. (35:32) I have to write things down. (35:34) That's how my mind works and I have to see what the plan is. (35:36) Okay. (35:37) And then I feel better about it.

Erin (35:39) But I had to really think out all the logistics and see if it was something that we could do. (35:45) And it is. (35:46) We've figured it out. (35:47) We have family that comes down here all the time and people come to visit all the time because we live in a vacation destination. (35:53) So we just have them be our diabetes supply mules kind of, you know.

Scott Benner (35:58) Was gonna say you're the most popular people in the family now. (36:00) Right?

Erin (36:01) Right.

Scott Benner (36:02) Yeah. (36:02) And they're like, hey. (36:02) Wait till the wait till the humidity lifts and we'll head down and sleep on their couch for a while. (36:08) And then you use them

Erin (36:09) as place to stay if you can bring some Yeah. (36:11) Some Dexcoms and Omnipods.

Scott Benner (36:12) So reverse mule them and bring stuff into Mexico. (36:15) It's nice.

Erin (36:16) Yeah. (36:16) So it I it's worked out, and I've I've met some other families that kind of have done the same thing. (36:22) There's a family that lives here that's from Sweden now, and they were on the same devices. (36:27) I mean, there's other kids that have diabetes here. (36:30) There's less than back home Right.

Erin (36:32) From what I've seen, but it's also a smaller area.

Scott Benner (36:36) Okay. (36:36) This is this seems like a a good plan. (36:38) It's working. (36:39) Yeah. (36:40) Are you working down there or have you not worked since you left?

Erin (36:43) No. (36:44) Lovely. (36:44) I don't know that I could have. (36:46) I'm I'm ready now. (36:48) But, yeah, at first, it it would've it would not have worked.

Erin (36:51) So the girl started school August. (36:54) We meet with the nurse who only speaks Spanish. (36:57) Her work phone cannot download the Dexcom Follow app because it's not available in Mexico, and she has a Mexican phone. (37:05) So I had to provide her with an old iPad, And that that was fine. (37:09) That worked out fine.

Erin (37:10) But this this nurse was great and she really took on a big responsibility for my daughter Mhmm. (37:16) But she would message me probably 25 times a day.

Scott Benner (37:20) Oh, she's, like, real nervous.

Erin (37:22) It was. (37:22) Oh, yeah. (37:23) I think so. (37:24) So this year so that year was just it was hard, and I I appreciated that she was really she really cared, and I think she was scared something was gonna happen. (37:32) I don't think she had clearly dealt with a diabetic child before.

Erin (37:35) So this year, my seven year old is kinda managing herself. (37:40) The nurse is there for backup, but the Omnipod five has custom foods that you can add in the app. (37:47) Mhmm. (37:47) So I just change her carb count for her lunch every day in that app and then her snack carb count. (37:55) And there's certain snacks that she gets from the cafeteria.

Erin (37:59) I have all that preloaded, and she's able to just dose herself.

Scott Benner (38:02) Awesome.

Erin (38:04) Yeah. (38:04) We have the cap, you know, on her amount of insulin that she can get it at one time per bolus

Scott Benner (38:09) Yep.

Erin (38:09) You know, pretty low. (38:10) So she makes, you know, some kind of mistake, but she's right now, she can really feel if she starts to go low too. (38:17) So she's she's got some sugar in her little fanny pack, and she'll she'll eat a couple Smarties or, you know, whatever she feels like she needs, and she's becoming really good at it.

Scott Benner (38:27) Adapt. (38:27) Yeah.

Erin (38:28) I asked her a lot at the beginning of the school year, like, do you are you okay with this? (38:33) Is it too much? (38:34) She's like, mom, it's fine. (38:35) I don't have to go to the nurse anymore. (38:37) It's great.

Scott Benner (38:37) So she's pre came pretty far from, like, dodging you coming out over with a needle in the hospital.

Erin (38:42) Oh, my gosh. (38:43) Like, yeah. (38:44) Like, night and day.

Scott Benner (38:45) And Yeah. (38:46) You think that the desire to be autonomous is what got her there? (38:50) Or, like, what do you think let her is it just her personality now when you stop and think about it?

Erin (38:55) Probably her personality. (38:58) I don't think she had a known desire to become, you know, more independent, but it got to the point so this school year, there's a new principal at the school, and she's there's now three diabetics total at this school. (39:11) Mhmm. (39:11) And she's having all the diabetic kids pay for a one on one nurse to follow your kid around all day. (39:18) And I'm like, that is just not I didn't think that was one reasonable.

Erin (39:22) It's gonna be a huge cost Yeah. (39:23) For one. (39:24) I mean and I don't think that's what she needs. (39:26) She's gonna become dependent on this person. (39:28) She's finally, like, coming kind of out of her shell and and is feeling really comfortable here.

Erin (39:32) I don't want her to become dependent on this one person and kind of fall backwards. (39:37) So we really push for her not to have that.

Scott Benner (39:41) Did the others get pissed at you?

Erin (39:43) One is only four years old, so they were planning on on hiring their own nurse anyway.

Scott Benner (39:48) Okay.

Erin (39:49) And I have a relationship with that parent. (39:51) The other parent, I haven't met, and that was one of the concerns that the principal was having. (39:56) She's like, we already told all these other parents they have to do this. (39:59) But they also wouldn't let us share a nurse, which I don't know. (40:02) I thought that would have would have been a good compromise.

Erin (40:04) I haven't received any any feedback because, you know, negative feedback. (40:08) So we've had a couple meetings where, you know, they're saying that our daughter's doing fine. (40:13) So Cool. (40:13) We're gonna keep going. (40:14) Awesome.

Erin (40:15) Going the way it is until I hear hear otherwise.

Scott Benner (40:17) Now let me talk to you more about the way you feel like your husband's thing is easier for him and his a one c, what, comes back lower than hers does?

Erin (40:24) Much. (40:25) Yeah. (40:25) He's in, the 5.5

Scott Benner (40:27) What?

Erin (40:27) Sometimes six range.

Scott Benner (40:28) How much

Erin (40:28) she does? (40:28) She's in the the seven to 7.3.

Scott Benner (40:32) You're telling me that there's somewhere a seven year old that's managing their diabetes to a 7.3? (40:36) That's pretty great. (40:38) I mean, how is it different between what she does during the day kind of on her own and what happens when she's back home with you?

Erin (40:45) I don't think there's much difference. (40:46) She might not, you know, not give as long of a pre bolus for, like, lunch.

Scott Benner (40:51) Yeah.

Erin (40:51) She doesn't look at the clock and say, okay. (40:53) 10:15. (40:54) I have to pre I have to bolus for lunch. (40:56) It's kind of like they start packing up and getting ready to go outside, and I think that's when she does it. (41:01) And then if she's getting a snack from the cafeteria, she just does it while she's in line.

Erin (41:06) I don't see a huge negative effect from that at school. (41:12) It's working okay. (41:13) I try to do a longer pre bolus at home, but other than that, it's pretty similar.

Scott Benner (41:19) Does she eat differently than your husband?

Erin (41:22) Yeah. (41:22) My husband for a long time, up until my daughter was diagnosed, he really didn't eat carbs, sweets, anything because he, at the beginning, was taught not to eat those things because they thought he was type two and, you know, he made these big dietary changes. (41:38) And then once he saw that she could eat things, she just had to give herself insulin for it or we had to give her insulin for it. (41:47) He started eating fun things again, which I think is great. (41:51) You know, he's not going crazy, but he's able to enjoy enjoy things that he hadn't enjoyed for years.

Erin (41:57) But he does eat pretty healthy in general.

Scott Benner (42:00) So what do you think was going on there? (42:02) He he was managing through, like, I'm not saying restricting carbs, but, like, by not eating a bunch of carbs, he was managing that way. (42:08) He found a vibe that worked for him. (42:10) Do you think that he had a desire to not have that happen to your daughter so he kind of expanded on his own so that it would be the norm? (42:19) What do you think happened there with the shift?

Erin (42:21) That might have happened. (42:22) Like, I don't think consciously.

Scott Benner (42:26) Okay.

Erin (42:27) Because I think he would have expressed that to me, but I think he said it just opened his eyes. (42:32) Oh, I can actually eat these things in moderation and I give myself insulin.

Scott Benner (42:36) He was released from a prison?

Erin (42:38) Yeah. (42:39) I think yeah.

Scott Benner (42:39) Oh, so this is the only way he knew how to handle it?

Erin (42:43) Yeah. (42:43) And it was the way he was taught to manage it. (42:46) Right. (42:47) Even after he was on insulin, he thought he was still had to manage it the way he had been.

Scott Benner (42:51) Okay. (42:51) Okay. (42:52) That makes sense. (42:53) At what point during this process do you find the podcast?

Erin (42:57) It was pretty early on. (42:59) I think probably the night that we came home, I started looking on Facebook for Facebook groups. (43:06) Mhmm. (43:06) And I I just looked up, like, moms of parents of type one diabetics. (43:10) And then I think the next couple days, your Facebook group kept popping up in in people's comments.

Erin (43:17) So I found the Facebook group first and then started listening to the podcast later.

Scott Benner (43:22) And that has helped you where you're at now?

Erin (43:25) Yeah. (43:26) A lot. (43:26) It's helped a lot. (43:28) Not only, like, how to manage the diabetes, but also hearing people's people's stories and knowing kinda life goes on. (43:37) I mean, I was already we were already doing it, but hearing all kinds of people from all different walks of life, you know, are are managing.

Scott Benner (43:45) Yeah. (43:45) And that makes it what feel possible or less, like, stressful?

Erin (43:51) Yeah. (43:51) And it kinda makes I feel like when I brought up moving to Mexico, just to people in general, they would kinda think we were kinda crazy. (43:58) And then add our child's diagnosis to it, people kinda really thought we were crazy. (44:03) So it makes me feel like I'm not crazy. (44:06) Like, we're living our life like we want to, and I think it's obviously possible, but I feel like people thought we were kinda nuts.

Scott Benner (44:12) Really?

Erin (44:12) It makes me feel less nuts.

Scott Benner (44:13) Do you think they still think that?

Erin (44:15) Probably. (44:16) But

Scott Benner (44:16) Why? (44:16) Because you just went against, like, the norm?

Erin (44:19) Well, kind of when people just have this bad connotation of of Mexico in general, I think, that.

Scott Benner (44:24) Oh. (44:25) Oh, Oh, oh, I thought you just meant about being, like, abroad or something, but it's you think it's

Erin (44:29) No. (44:30) I think it's a lot of it's, like, Mexico in general.

Scott Benner (44:33) I see. (44:34) Well, why didn't you feel that way?

Erin (44:36) Oh, I did at first.

Scott Benner (44:37) Oh, okay.

Erin (44:38) So we started coming here quite often. (44:40) We've been coming here for years. (44:41) I've been coming here with my husband since 2012, and I was scared to death the first time we came. (44:47) I don't know why. (44:47) I didn't I don't know what I thought was gonna happen, but I wasn't very well traveled in general, so leaving kind of my comfort zone was hard.

Erin (44:55) So, yeah, being here and living in a whole another country is a big

Scott Benner (44:58) It's a big deal.

Erin (44:59) A big move on my part. (45:00) I'm not very adventurous, but I'm getting there.

Scott Benner (45:02) I mean, listen. (45:03) I I think maybe all evidence to the contrary, but did you sell your home in in The US or no? (45:08) You still have a place at home?

Erin (45:10) We have no ties to, like, our

Scott Benner (45:13) own Oh.

Erin (45:13) Home Okay. (45:14) Anything. (45:15) Car, nothing. (45:16) Yeah. (45:16) So when we go back, we have to stay with family or, you know, a hotel or something, but that helped me become more comfortable here almost because I knew I didn't have a place to go back there.

Scott Benner (45:28) Yeah. (45:28) No. (45:28) It's no going back, sort of feeling. (45:30) How is the health care there? (45:32) Like, how do you find the doctors helping you with diabetes?

Scott Benner (45:35) I know you they don't have all the same devices, but how about the care and and the way people think

Erin (45:39) about it? (45:40) So we still see doctors back home a couple times a year, and then she has a pediatrician here that doesn't really manage her diabetes, but if if there was an emergency situation, he'd be there to help. (45:54) He's familiar enough with it and has actually diagnosed a couple kids with type one since we've been here and has told me about them, not giving me their names and all, you know, this information, but he's kinda told me the stories. (46:06) And then in June, the same daughter with type one had to have an emergency emergency appendectomy here in Mexico. (46:14) That went well.

Erin (46:15) I mean, it went as well as could be expected. (46:17) She had the surgery and went home the next day and and healed just fine.

Scott Benner (46:20) Wait. (46:20) Wait. (46:20) Your daughter had her appendix out?

Erin (46:22) Yeah.

Scott Benner (46:23) At how at what age?

Erin (46:25) Just in June.

Scott Benner (46:26) That's is that what did the doctor say about that? (46:29) Is that common for kids that age or not really?

Erin (46:32) He didn't say one way or the one way or the other. (46:34) I think it's something that just I think it just happens. (46:37) It's random. (46:38) I've heard of it happening. (46:39) Yeah.

Erin (46:39) You can't really prevent it. (46:41) It's not

Scott Benner (46:42) Yeah. (46:42) No.

Erin (46:42) Like a genetic thing, but

Scott Benner (46:44) That's interesting. (46:45) I don't have mine either. (46:46) I'll tell you what. (46:46) I'm better for it. (46:47) I don't even know if it has any impact at all.

Scott Benner (46:50) Oh.

Erin (46:51) I don't think so.

Scott Benner (46:51) All I know is they were like, this has to come out or you're gonna die. (46:53) And I was like, well, right on them. (46:55) Let's do that.

Erin (46:56) Please take it out. (46:56) Yeah.

Scott Benner (46:57) Have you noticed any other issues at all or is type one the only autoimmune now with her?

Erin (47:03) So far, it's the only one.

Scott Benner (47:06) Nothing for Hopefully. (47:07) And nothing for you? (47:08) You don't have a thyroid thing or anything like that? (47:11) No. (47:12) Okay.

Scott Benner (47:12) Mm-mm. (47:12) Your mom didn't either?

Erin (47:14) No. (47:15) Okay. (47:15) She was type two diabetic. (47:17) She's she's in the nondiabetic a one c range now, but that's a separate, you know, separate issue.

Scott Benner (47:23) But How did your husband come upon a GLP medication? (47:27) Was it for weight and then he noticed it helped him with his diabetes, or did he have a doctor who was thoughtful about it?

Erin (47:32) No. (47:33) He had to convince a doctor to let him try it for type one. (47:37) He's very much into researching things and finding out answers and better ways to do things. (47:44) So he did wanna lose some weight, but then I think in that research he found I I don't know what research he found, but that it could be helpful in managing his type one as well.

Scott Benner (47:54) How long has he been on it? (47:55) How have you seen him change?

Erin (47:57) He's been on it for a few years now. (47:59) He was on one years ago that he had to I think he had injected every day, and now he's on tirzepatide, but he's a lot healthier. (48:10) I mean, he wasn't heavy heavy, but he had, you know, some weight to lose. (48:14) He's a big guy. (48:14) He's six foot six.

Scott Benner (48:15) Holy crap.

Erin (48:16) I think he was two hundred and, like, eighty pounds when he started, and now he's two forty, two thirty five maybe.

Scott Benner (48:24) How tall are you?

Erin (48:25) I'm five three and

Scott Benner (48:27) a half. (48:27) Oh, I guess he said we're going to Mexico. (48:28) You were like, I guess I can't. (48:30) Yeah. (48:30) I guess so.

Scott Benner (48:30) I I don't know how to resist that exactly. (48:32) Six six he could probably pick you up and carry you to Mexico, I would imagine.

Erin (48:36) I mean, I guess, but I'd go I'd go kicking and screaming if I didn't want to. (48:39) This

Scott Benner (48:42) giant man is stealing me. (48:43) Are your kids tall?

Erin (48:45) They are. (48:45) Nice. (48:46) Yeah. (48:46) So far. (48:47) Nice.

Erin (48:47) Yeah. (48:47) My, yeah, my 11 year old is five four. (48:50) I mean, so she's not super tall yet, but she's only 11.

Scott Benner (48:53) Well, to you, she's tall. (48:54) Let's just say.

Erin (48:55) Yeah. (48:55) She's she's a little taller than me. (48:57) Yeah. (48:58) Oh

Scott Benner (48:59) my gosh. (48:59) So he did that for his diabetes. (49:01) It helped it helped him with his weight, but you think he when you say he's healthier, does that did you just mean weight, or do you mean other ways?

Erin (49:08) Well, weight, he just he kind of like, to me, he just looks healthier. (49:13) I don't know how to really

Scott Benner (49:14) He's leaner?

Erin (49:15) He's leaner.

Scott Benner (49:16) Okay.

Erin (49:16) He doesn't drink alcohol at all anymore. (49:19) I think that's probably a a good a good thing.

Scott Benner (49:21) Wait. (49:22) He did?

Erin (49:23) He used to drink, yeah, alcohol.

Scott Benner (49:25) Do think the GLP took his taste away for it, or what are you saying?

Erin (49:28) No. (49:29) I don't think so. (49:30) But when you asked how he was healthier, I think I think in that way. (49:33) I don't know. (49:33) He was on the GLP one for a while before he completely stopped drinking, so I don't know that that that stopped it.

Erin (49:39) It was just it was a conscious decision to to not drink anymore.

Scott Benner (49:42) Did he ever mention that he couldn't I'm sorry to use phrases where it sounds like I'm trying to be young, but I'm not. (49:48) Did he ever talk about the GOP stopping him from feeling the buzz of alcohol? (49:53) No. (49:54) No. (49:54) You never heard that one?

Scott Benner (49:55) Okay. (49:55) No. (49:56) I've heard that from a couple of people. (49:58) Like, they they feel like they metabolize it differently when their when their GOP is working.

Erin (50:03) I

Scott Benner (50:03) don't have no idea if that's by the way, let me just be clear. (50:06) I have no idea if that's right, accurate, any based in reality. (50:10) I've just I've had two different people say it to me. (50:11) So that that's

Erin (50:12) Yeah. (50:13) Oh, could be. (50:13) Maybe it took maybe he didn't even realize it. (50:15) Maybe he took the fun away, and he said, I'm not gonna drink anymore.

Scott Benner (50:18) It's like this ain't working anymore. (50:19) Well I mean, obviously, he has a lot to get away from. (50:22) He lives on a beach. (50:24) It's life

Erin (50:24) I it's like know.

Scott Benner (50:25) Life's very difficult.

Erin (50:26) I know. (50:26) I'm staring at the ocean as we speak.

Scott Benner (50:29) I mean, I looked a little bit because I thought I knew where Cabo was and it's down the peninsula. (50:33) Right?

Erin (50:34) Yeah. (50:34) Yeah. (50:34) It's it's Baja California. (50:36) We're at the very very tip we live. (50:38) So don't be very specific.

Erin (50:39) I'm not giving my address up, but we live in San Jose Del Cabo, which is a little north of Cabo San Lucas and it's it's it's just beautiful.

Scott Benner (50:46) And that's where my where my very affordable condo will be available in a year? (50:50) How long exactly?

Erin (50:51) Probably a couple years.

Scott Benner (50:53) I didn't really save your kid's life though, so I don't think you're gonna cut me a break on the price. (50:56) I I I need one of those people who's like on, and they're like, oh my god. (50:59) You saved me. (51:00) How come those people aren't building condos on the

Erin (51:02) beach? (51:02) Right.

Scott Benner (51:03) I'm waiting for this thing to pay back one way or another. (51:05) It's not happening.

Erin (51:06) It it will.

Scott Benner (51:07) If I just tried to get somebody to name a baby after me and it won't happen. (51:10) I mean, it's very difficult to get people to read. (51:12) They're they're very happy to tell you, like, how how valuable it's been for them. (51:15) But then you ask them to name a baby or give you a cheap condo and suddenly, they don't know you. (51:20) You know what I mean?

Erin (51:21) Yeah. (51:21) You ask for some form of repayment. (51:23) Yeah. (51:23) You get I'd

Scott Benner (51:24) like to see a little, what they call quid pro quo. (51:27) Right? (51:27) Like Right. (51:29) Your a one c's and the fives? (51:32) My condo is cheaper.

Scott Benner (51:33) No? (51:34) Nothing? (51:34) Okay. (51:35) I think it's awesome that you guys did this. (51:37) And I I mean, I would see it as adventurous too.

Erin (51:40) Yeah. (51:40) I think so now. (51:41) It just it it definitely pushed me out of my comfort zone and for the better, I I think.

Scott Benner (51:47) Yeah. (51:47) Is it, like, lessened anxiety that you feel in other parts of your life?

Erin (51:53) Yes. (51:54) Yeah. (51:55) At one point in my life, I was, like, had a diagnosed panic disorder, like agoraphobia where I was scared to drive by myself, like, to go in a grocery store. (52:05) It got really bad for a while there. (52:06) This was a number of years ago.

Erin (52:08) I've overcome that in living in a foreign country. (52:12) So

Scott Benner (52:12) That happened to anybody else in your family?

Erin (52:14) My dad, not as severe, I guess, but, yeah, he had that as well.

Scott Benner (52:19) Okay. (52:20) Did yours pop up in and around COVID or something that you can point to?

Erin (52:26) Yeah. (52:26) It was there was a traumatic kind of car accident that happened or car incident that happened. (52:32) I won't get into all those details. (52:34) But Sure. (52:34) Yeah.

Erin (52:35) There was there was something that I could kinda pinpoint it to, and it just kind of, I think triggered my already I was already really anxious about everything and kind of a it's like a worry warp, but looking back that it wasn't just normal worrying. (52:46) It was Mhmm. (52:47) Very anxious worrying and overthinking things, but then it just got out of control. (52:52) But with a lot of therapy and just kind of exposing myself to things, it kinda snapped me out of it. (52:59) And

Scott Benner (52:59) Talk therapy?

Erin (53:01) Yeah. (53:01) And then, I don't know if that was really what helped, but I think just getting out and doing things help more. (53:08) And I think maybe the talk therapy supported me in getting out and doing things.

Scott Benner (53:12) It's interesting because you've been through been through is the wrong I didn't mean it that way. (53:16) But, like, you've experienced a lot more than Yes. (53:19) Like, you know what mean? (53:19) Like, you've almost lived two lives. (53:21) It's interesting.

Scott Benner (53:21) Right?

Erin (53:22) Yeah. (53:22) No. (53:23) I really I really have.

Scott Benner (53:24) Right. (53:24) Yeah. (53:25) Like, so I imagine, like, you're 19, you have a baby, guy's not around for that much longer, you're on your own a little bit, you know, there's some medical problems. (53:33) It's probably a lot of head down, like, just do the thing you're supposed to do. (53:36) And then right and then what does it turn into like a little thing where you're almost like you have a doll that talks to your friends.

Scott Benner (53:42) Right? (53:42) That happens for a while. (53:43) Right? (53:43) And then you matured it while she's maturing. (53:46) Is that how it went?

Erin (53:46) Yeah. (53:47) Yeah. (53:48) Yeah. (53:48) If you ever watched like the Gilmore Girls, feel like. (53:51) And my older daughter is also named Rory from that.

Erin (53:53) It wasn't from the show. (53:54) She was born right before it came out, but it was I mean, it was kinda similar to that. (53:58) We were yeah. (53:59) We kinda grew up together.

Scott Benner (54:00) Yeah. (54:01) But then she's off on her own, and then you're like, you have a young family again.

Erin (54:05) Yeah.

Scott Benner (54:06) Yeah. (54:06) I've been struck a number of times over the years making the podcast when you talk to much older people Uh-huh. (54:12) Who have not had the benefit of a spouse living, like, a really long time. (54:16) It's interesting. (54:17) You can talk to people sometimes who have lived three separate lives inside of a lifetime.

Erin (54:23) Yeah.

Scott Benner (54:23) It, had experience like yours, like, know, a baby early, baby grows up, moves out of the house, they get married again, they're married for fifteen years, they're really having, a nice life, husband drops dead, they do it again. (54:36) And then you start asking them questions about the first husband or the second, and it's super interesting. (54:42) Like, they remember them, but more like stories they've read.

Erin (54:46) Yeah.

Scott Benner (54:46) Yeah. (54:47) It's really interesting, actually. (54:49) But not that I'm saying your daughter's a remembrance of yours, like, it's, you know, Goldilocks and the three bears.

Erin (54:54) No. (54:54) But her childhood kind of is, like because our relationship now is an adult. (55:00) She's my child, but it's like an adult, you know Yeah. (55:03) Relationship now.

Scott Benner (55:04) So And she and you probably have friends that aren't much older than her.

Erin (55:08) Yeah.

Scott Benner (55:08) Yeah. (55:09) Yeah. (55:09) My son's 25, but I don't know any 25 year old people I hang around with.

Erin (55:13) Right.

Scott Benner (55:14) But I'm a decade older than you are.

Erin (55:16) Yeah. (55:17) But also being an older parent now for, like, my seven year old. (55:20) Yeah. (55:20) Some of the parents are are

Scott Benner (55:22) They're younger.

Erin (55:23) They're younger. (55:24) Yeah. (55:24) And some are my age. (55:25) I mean, and some are older. (55:26) But, yeah, it's a whole it's a whole range.

Scott Benner (55:29) Yeah. (55:29) No. (55:29) I I find it incredibly interesting. (55:31) What motivated you to be on the podcast?

Erin (55:33) I think just my fear of when we first got this diagnosis, and I was like, oh, our plans are gonna have to halt, and we're gonna have to change everything. (55:42) Stop our plans. (55:43) Really freaked me out, and listening to people's stories kind of helped me. (55:49) So hopefully, this story can help someone or or realize you you can live the life that you had planned even though you got this little bump in the road.

Scott Benner (55:57) You're giving back. (55:57) You wanna add your story to it so somebody else might hear it.

Erin (56:00) Yeah. (56:01) Yeah.

Scott Benner (56:01) It's lovely. (56:02) Plus you have nothing but free time in that beautiful beach there. (56:05) So, like, why not? (56:05) Yeah. (56:06) Yeah.

Scott Benner (56:07) When those kids leave for school, you're like, see you suckers.

Erin (56:10) Yeah. (56:10) They

Scott Benner (56:11) Mommy lives at the beach.

Erin (56:13) They leave early too. (56:14) They start school at 07:30 in the morning. (56:16) Oh,

Scott Benner (56:17) the whole day is yours. (56:18) Don't get a dog. (56:19) Jesus.

Erin (56:20) Oh, we have one. (56:21) No.

Scott Benner (56:21) Oh my god.

Erin (56:22) She's fine.

Scott Benner (56:24) Oh my god. (56:24) I like, you're young. (56:26) You they must leave, and you must be like, oh, the whole day is mine.

Erin (56:31) Sometimes. (56:32) And I lonely? (56:33) I don't know. (56:34) I don't I don't quite enjoy being in charge of the house all day anymore.

Scott Benner (56:39) Really?

Erin (56:39) It's getting a little bit boring. (56:41) I'm ready to

Scott Benner (56:41) Does that Sasquatch you married, is he at home or does he go to an office?

Erin (56:46) He's He's

Scott Benner (56:47) six six. (56:48) Right? (56:48) Like, it must you must look up once in a while and think something escaped from the zoo when it's in your house now.

Erin (56:54) Yeah. (56:54) I I'm so it's so funny. (56:56) I'm so used to it. (56:58) So when I see someone out in in the wild and they are tall, it they have to be very tall.

Scott Benner (57:03) To throw you off.

Erin (57:05) Yeah. (57:06) Yeah.

Scott Benner (57:06) Clearly not apples to apples because you said your husband's six six. (57:10) My wife's five nine and wears a lot of heels. (57:13) Yeah. (57:13) And because of that, like, she stands, like, six feet tall sometimes when we're out places.

Erin (57:18) Yeah.

Scott Benner (57:18) And I everyone looks short to me now, but I also feel shorter than I am Uh-huh. (57:25) Because of her.

Erin (57:25) Because you're right?

Scott Benner (57:26) Yeah. (57:27) And, like, every once in a while, she won't be around and there's, like, a bunch of women around. (57:32) And I I have, like, a conscious overwhelming feeling like, oh, if I would have married a shorter girl, I'd feel taller.

Erin (57:39) Yeah.

Scott Benner (57:39) It's like yeah. (57:40) It it because you must feel like I don't know. (57:43) You must feel like a small child standing next someone. (57:45) Must because that's how I ended up feeling. (57:47) I just had it recently.

Scott Benner (57:48) I went to a talk a speaking thing, and there was a dinner. (57:51) And I was standing in a group with a bunch of people, and I was the tallest person in the group. (57:55) And I was like, this is what it would have felt like if I would have just not married Kelly. (57:59) Yeah. (57:59) Yeah.

Scott Benner (57:59) I've

Erin (58:00) Yeah. (58:00) I've never had that experience, I don't think, unless I'm, like, literal children.

Scott Benner (58:04) Literal children. (58:05) Well, five threes. (58:06) I mean, you know, you're

Erin (58:07) not gonna I'm not I'm not short, but, know, I'm never the tallest person in a group.

Scott Benner (58:10) Yeah. (58:10) You're not gonna overwhelm a a group of people as far as height goes.

Erin (58:13) No. (58:13) Not with my height.

Scott Benner (58:14) I wanna be honest. (58:15) I'm only five nine, but I am frequently the tallest person in groups that I'm in. (58:21) Now when someone's taller than me, and I say this all the time. (58:24) When someone's taller than me, I look like child standing next to them.

Erin (58:27) Yeah.

Scott Benner (58:27) But there are a lot of people who are shorter than me and around a lot.

Erin (58:30) Right. (58:31) So My husband played football. (58:34) He said all his college friends and adult friends are

Scott Benner (58:38) Monsters.

Erin (58:39) Almost all his size. (58:40) Yeah. (58:40) So it's not yeah. (58:42) It's not unusual.

Scott Benner (58:43) No. (58:43) I mean, he I'm looking I I mean, I yeah. (58:46) I'm looking at your description of him in my mind, and I'm saying, boy, he was a tight end. (58:49) Right? (58:49) He played tight end?

Erin (58:51) He was offensive tackle.

Scott Benner (58:53) A tackle? (58:53) Oh, so he was thicker than

Erin (58:55) He was. (58:56) Yeah.

Scott Benner (58:56) Ah, okay. (58:57) Jeez. (58:58) Look at him. (58:58) Did he make any did it go anywhere? (59:00) Did it look like it was gonna turn into a thing or

Erin (59:02) He played professionally for a little bit. (59:04) It didn't, but then he got injured and that was it.

Scott Benner (59:08) Oh, that's a shame. (59:09) You know, it's funny we talked about it the other day because it's used my son played baseball all the way through college. (59:14) And, you know, there's people say, they're the pros. (59:17) They're the best in the world. (59:19) And we always say, well, they're the best in the world that didn't get hurt.

Erin (59:23) Yeah.

Scott Benner (59:23) Yeah. (59:23) That's a part of it you don't think about until you're involved in it. (59:26) Like, are plenty of guys out there that can pitch, but their arms fell apart or, you know, something happened and, you know, they had the skill, but their body wouldn't keep up with it. (59:35) It's kind of interesting. (59:36) Yeah.

Scott Benner (59:37) Well, you met him later though. (59:38) You didn't know him in college.

Erin (59:40) No. (59:40) So we we actually went to the same high school and we're friends in high school, but then re remet as adults. (59:47) So, yeah, I was we didn't know each other then.

Scott Benner (59:50) How about that? (59:51) That's super interesting. (59:53) Yeah. (59:53) Wow. (59:53) Awesome.

Scott Benner (59:54) Can I ask you, when you think about your daughter's a one c, her outcomes, her highs and lows during the day, you know, where her variability sits, What do you think the steps are to get her to if you're interested in a lower number or less variability? (1:00:09) Like, what do you think has to happen to get you there?

Erin (1:00:11) So her eating habits aren't aren't the best. (1:00:13) She's getting better as she gets older. (1:00:15) When she was first diagnosed, her her foods that she would eat, it wasn't limited. (1:00:22) She just didn't she just didn't like very healthy things, and that's completely different than my older daughter. (1:00:27) We fed them the same when they were little and just have their preferences.

Scott Benner (1:00:30) Yeah.

Erin (1:00:31) And so we're slowly kind of integrating healthier eating habits with her, and she's choosing kind of easier to dose for. (1:00:38) I don't even wanna say healthier, but they're healthier and easier to dose for. (1:00:41) Some of these, like, processed foods and just things that she likes to eat are I've learned a lot on how to dose for them, but it's still not not as easy. (1:00:51) And then coming here to a new country where things aren't like, we'll go out to eat. (1:00:55) There's not a lot a lot of chain restaurants.

Erin (1:00:57) We don't go out to eat a ton, but it's just it's just kinda estimating or using AI to kinda guess how many carbs are in this this meal and just kind of guesstimating and figuring that out. (1:01:09) And we are, and I think she's doing she's doing okay for the time being, and I think it's just gonna get better. (1:01:15) I'm gonna get better at dosing for these things, and her eating habits are gonna get better. (1:01:20) And I think those two things combined are gonna gonna help a lot.

Scott Benner (1:01:23) Valuable for you. (1:01:24) What's the thing you're most concerned about moving forward? (1:01:26) Like, what's one of those, like, mom, like, panic worries you have?

Erin (1:01:31) I just don't want her to have awful things happen to her medically as she gets older and have, you know, effects bad effects from

Scott Benner (1:01:40) Complications are what

Erin (1:01:41) you're Complications. (1:01:42) Yeah.

Scott Benner (1:01:42) Yeah. (1:01:42) That's the

Erin (1:01:42) word I was looking for. (1:01:43) But so sometimes I'll see a high blood sugar after breakfast when she's at school, and that's sometimes what comes to my mind is, like, oh my gosh. (1:01:51) Like, this is the third day in a row she's had this high blood sugar after stir, you know, breakfast, and she's at school, and and this is gonna lead to this. (1:01:59) But in the long term, I don't think I don't think it will. (1:02:02) She's still relatively new at it.

Erin (1:02:05) I mean, it's been a year and a half, but in the whole grand scheme of things, she has her whole life and I I think we're doing okay.

Scott Benner (1:02:10) Mhmm. (1:02:11) Did you ever have to manage her without the automation or were you into it right away?

Erin (1:02:16) Like, well, we were MDI for a few months first.

Scott Benner (1:02:18) Okay. (1:02:19) Yeah. (1:02:20) Was she honeymooning during that time?

Erin (1:02:23) Looking back, possibly, but not significantly. (1:02:27) That's how I would describe it. (1:02:29) No. (1:02:30) It went into kind of full blown insulin dependence, not not a lot

Scott Benner (1:02:35) of Pretty quick.

Erin (1:02:36) Variables at first. (1:02:38) So maybe a little bit, but not no. (1:02:40) There's there wasn't like this drastic shift that I ever saw from coming out of it.

Scott Benner (1:02:44) Okay. (1:02:45) Do you think you could go back to managing that way, or do you think that a lot of your success is is hinged on the the devices you're using?

Erin (1:02:53) No. (1:02:54) I think I I think I could go back to that. (1:02:56) I think I definitely could. (1:02:57) She probably wouldn't love it, but I could.

Scott Benner (1:03:00) Okay.

Erin (1:03:00) Yeah.

Scott Benner (1:03:00) That's cool.

Erin (1:03:01) We might be able to manage in school though. (1:03:03) You know, the devices really make school time a lot a lot more manageable because she wouldn't be able to be giving herself injections on her own at school. (1:03:12) That's not really something she could be doing at this point. (1:03:14) So I'm thankful for for that.

Scott Benner (1:03:16) Yeah. (1:03:16) Are you able to text her during the day, and is that something you actually do as part of your management plan?

Erin (1:03:21) I tried it first and she wouldn't see it or Mhmm. (1:03:27) I would call her and she'd like she'd be in the middle of the class. (1:03:30) She wouldn't like go excuse herself. (1:03:32) Like, she'd just be in the middle like, hey, mom. (1:03:34) Like, we're not doing that right now if I ever need something.

Erin (1:03:37) Like, there was a day kind of recently, maybe last week or the week before where she just had a really high blood sugar. (1:03:42) It didn't make sense why, and I thought the Dexcom was off. (1:03:44) So I just messaged the nurse that's there. (1:03:46) I said, hey. (1:03:47) Can you go down and have her finger stick?

Erin (1:03:48) And if it's right, can you have her do a correction dose? (1:03:50) So I'm able to message the nurse when needed. (1:03:53) Mhmm. (1:03:53) Other than that, I've been able to not text her. (1:03:58) Eventually, I think when she gets a little bit older and a little more responsible with the phone, because right now, she doesn't even really think of it as a phone.

Erin (1:04:05) It's just her

Scott Benner (1:04:05) Device.

Erin (1:04:06) Dosing device. (1:04:07) Yeah. (1:04:07) She knows it's a phone.

Scott Benner (1:04:09) I love the idea of her in the middle of a lesson, she just picks that phone up, she's like, go for Dylan. (1:04:13) And

Erin (1:04:14) Yeah. (1:04:14) I'm just so I think this isn't gonna work. (1:04:18) So eventually, it will. (1:04:20) But like I said, I have the nurses back up right now. (1:04:23) If I ever really needed to get a hold of her

Scott Benner (1:04:25) You can do

Erin (1:04:26) it. (1:04:26) I can message the nurse. (1:04:28) Yeah.

Scott Benner (1:04:28) Very cool. (1:04:28) Very cool. (1:04:29) Is there anything that I have not asked you about that I should have or anything I missed or glanced over or anything like that?

Erin (1:04:35) I don't think so. (1:04:36) I think we we went through all my lives and

Scott Benner (1:04:39) My lives.

Erin (1:04:41) And our experience here. (1:04:43) Yeah. (1:04:44) I think I got got everything out that I wanted to. (1:04:46) Just most importantly, don't let diabetes or any other diagnosis really. (1:04:52) I mean, I some have more restrictions than others, but especially this diagnosis, it's really manageable no matter where you go.

Scott Benner (1:04:59) And all the concerns that you had in the beginning ended up not being things that actually held you back?

Erin (1:05:05) Yeah. (1:05:06) Right. (1:05:06) Yeah. (1:05:06) Not to

Scott Benner (1:05:07) be too philosophical, but if they would have held you back, then it would have turned out that you were holding yourself back, not them.

Erin (1:05:13) Yes.

Scott Benner (1:05:14) Yeah.

Erin (1:05:14) Yeah.

Scott Benner (1:05:14) Okay. (1:05:15) Yeah. (1:05:16) Alright. (1:05:16) Well, then I think that's your takeaway besides marry a tall guy. (1:05:19) That's also important.

Erin (1:05:20) But one without diabetes.

Scott Benner (1:05:22) But that one if you can find a tall guy without by the way, now you're gonna get hate from people with diabetes. (1:05:26) They're gonna be like, woah, there's nothing wrong with me. (1:05:28) You know what she's saying. (1:05:29) It would have been easier.

Erin (1:05:30) Yes.

Scott Benner (1:05:31) You all know it would have been easier by the way. (1:05:33) Very nice tall boy who likes the beach, obviously, and is a hard worker because he he's making stuff happen.

Erin (1:05:39) Yeah. (1:05:39) We're doing we're doing stuff out here. (1:05:41) Pretty awesome.

Scott Benner (1:05:42) I I'm gonna look into you. (1:05:44) I feel like I heard you say things. (1:05:45) Feel like I could go down there and maybe rent a boat from you or something like that. (1:05:48) I think you got a whole thing going on down there. (1:05:51) Yeah.

Scott Benner (1:05:51) We do. (1:05:52) I'll just

Erin (1:05:52) We do. (1:05:53) Yeah.

Scott Benner (1:05:53) You can

Erin (1:05:53) send me a message. (1:05:54) I'll give you the info.

Scott Benner (1:05:56) Hey. (1:05:56) And for anybody else listening, if you're building condos or houses on the beach, I and I've helped you, I mean, now's the time. (1:06:01) Right? (1:06:02) It's getting to the end now. (1:06:03) I've been doing this eleven years.

Scott Benner (1:06:04) Scotty needs a you know what I mean? (1:06:07) I need to quit on the pro quo at this point.

Erin (1:06:09) Right. (1:06:10) I'd like to get something out

Scott Benner (1:06:12) of this before it's over. (1:06:13) Then I would like it to be, that involved the beach if somebody could help me. (1:06:17) My wife would be thrilled, by the way, to do what you did.

Erin (1:06:21) Really?

Scott Benner (1:06:22) Yeah. (1:06:22) The move so let me be clear. (1:06:24) There's no way she's moving away from these children. (1:06:27) So Right. (1:06:27) In the end, she's not doing this.

Scott Benner (1:06:29) But if you could magically put her on a beach somewhere, I think the happiness quotient for Kelly would go up a 150%. (1:06:37) I think I think that girl would thrive in the sun. (1:06:41) So

Erin (1:06:41) Yeah. (1:06:41) It's made my life better and we came from Southern California, so I wasn't really roughing it there, but

Scott Benner (1:06:46) Mhmm.

Erin (1:06:46) It's the water was cold. (1:06:48) It was gloomy at the beach all the time. (1:06:51) So here is you can enjoy it more and it's made me happier. (1:06:54) Yeah.

Scott Benner (1:06:54) I visited San Diego for the first time in my life as an adult as an adult as anything, past year towards the end of the season. (1:07:03) Yeah. (1:07:04) Beach was nice, but, yeah, water was cold. (1:07:06) It wasn't, like, it wasn't that doable. (1:07:08) The weather was insane.

Scott Benner (1:07:10) Like, I see why y'all are, like, trying to keep that to yourselves because, man, is the weather nice there.

Erin (1:07:19) Just love the in particular. (1:07:21) Yeah. (1:07:21) We were a little bit north and experiencing, like, wild fires and I

Scott Benner (1:07:25) don't want that.

Erin (1:07:26) You know, all that stuff. (1:07:27) So, yeah, it's it has its good and bad.

Scott Benner (1:07:29) If somebody, Aaron, could just make a perfect place for me to live, I would appreciate it. (1:07:34) And then, of course, can if you can make it affordable so I could actually live there, that would be nice too. (1:07:37) Guess, you know, the problem is is that anywhere that's perfect is you kinda get overrun with people who have more money than than me. (1:07:44) That's for sure.

Erin (1:07:45) So Yeah. (1:07:46) There's a lot of people with a lot of money here. (1:07:48) I had no idea.

Scott Benner (1:07:49) Oh, do you feel poor in Cabo? (1:07:51) Sometimes.

Erin (1:07:52) Yeah. (1:07:52) Yeah. (1:07:52) With the people that have moved here. (1:07:55) Yeah. (1:07:55) There's some really, really nice places here.

Scott Benner (1:07:58) My son came home from college and said I feel poor at college. (1:08:02) Like, awesome. (1:08:03) Well, I said try making friends with those kids because maybe they can get you a job one day.

Erin (1:08:07) Right.

Scott Benner (1:08:09) Alright. (1:08:09) Well, hold on for a second. (1:08:10) That is really nice of to come on and do this. (1:08:12) I really do appreciate it.

Erin (1:08:13) Okay. (1:08:13) Of course.

Scott Benner (1:08:14) Yep. (1:08:14) Hold on a second. (1:08:20) Today's episode of the Juice Box podcast was sponsored by the new Tandem Mobi system and Control IQ Plus technology. (1:08:27) Learn more and get started today at tandemdiabetes.com/juicebox. (1:08:32) Check it out.

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Scott Benner 12/18/25 Scott Benner 12/18/25

#1712 Porcine Cell Recipient

Kelly shares her groundbreaking experience as the second person in the US to undergo a porcine islet cell transplant. She discusses battling T1D burnout, the unique procedure involving the omentum, and her hope for a functional cure.

+ Click for EPISODE TRANSCRIPT

Scott Benner (0:00) Hello, friends. (0:01) Welcome to the Juice Box podcast. (0:03) Happy holidays to everyone juggling carbs, cookies, and the chaos of this season.

Kelly (0:16) My name is Kelly. (0:18) I live in Illinois. (0:19) I've been a type one diabetic for thirty eight years. (0:23) I recently had what is called a porcine islet transplant. (0:27) I am about a month out now, joined a clinical trial.

Kelly (0:30) I'm excited to talk about that, today.

Scott Benner (0:34) The podcast contains so many different series and collections of information that it can be difficult to find them in your traditional podcast app sometimes. (0:42) That's why they're also collected at juiceboxpodcast.com. (0:46) Go up to the top. (0:47) There's a menu right there. (0:48) Click on series, defining diabetes, bold beginnings, the pro tip series, small sips, Omnipod five, Ask Scott and Jenny, Mental Wellness, Fat and Protein, Defining Thyroid, After Dark, Diabetes Variables, Grand Rounds, Cold Win, Pregnancy, Type two Diabetes, GLP Meds, The Math Behind Diabetes, Diabetes Myths, and so much more.

Scott Benner (1:08) You have to go check it out. (1:09) It's all there and waiting for you, and it's absolutely free. (1:12) Juiceboxpodcast.com. (1:16) While you're listening, please remember that nothing you hear on the Juice Box Podcast should be considered advice, medical or otherwise. (1:24) Always consult a physician before making any changes to your health care plan or becoming bold with insulin.

Scott Benner (1:33) Today's podcast is sponsored by SkinGrip. (1:36) Your devices, they can fall off. (1:38) But with Skin Grip, they stay secure for the full life of the device. (1:42) Juice Box podcast listeners will save 20% on their first order at my link, skingrip.com/juicebox. (1:50) If you want a durable skin safe adhesive that lasts, you won skin grip.

Scott Benner (1:55) Today's episode is also sponsored by Omnipod. (1:58) Check out the Omnipod five now with my link, omnipod.com/juicebox. (2:04) You may be eligible for a free starter kit, a free Omnipod five starter kit at my link. (2:11) Go check it out. (2:12) Omnipod.com/juicebox.

Scott Benner (2:15) Terms and conditions apply. (2:16) Full terms and conditions can be found at omnipod.com/juicebox. (2:21) The podcast is also sponsored today by US Med. (2:25) Usmed.com/juicebox or call (888) 721-1514. (2:32) You can get your diabetes testing supplies the same way we do from US Med.

Kelly (2:37) My name is Kelly. (2:38) I live in Illinois. (2:40) I've been a type one diabetic for thirty eight years. (2:44) I recently had what is called a porcine islet transplant. (2:48) I am about a month out now, joined a clinical trial.

Kelly (2:51) I'm excited to talk about that, today.

Scott Benner (2:53) Awesome. (2:54) Kelly from Illinois. (2:56) You're Kellinois. (2:58) Now we're 30 did you say thirty eight years?

Kelly (3:02) Thirty eight years. (3:03) How old?

Scott Benner (3:03) How old are you now?

Kelly (3:05) 45.

Scott Benner (3:06) Wow.

Kelly (3:07) I was diagnosed just before, just before I started third grade.

Scott Benner (3:11) Okay. (3:12) Alright. (3:13) Do you remember much about it?

Kelly (3:15) So we were living in South Florida at the time. (3:18) I remember being in second grade and just having all the classic symptoms. (3:21) Right? (3:22) Frequent urination. (3:23) Just excessive thirst was probably the one I remember the most.

Kelly (3:27) My parents started to notice that I was losing weight. (3:30) And at one point, I was starting to lose some hair. (3:33) So they took me to the doctor, and, they, of course, did the blood did the blood test, and it was off the charts. (3:40) I don't think that the machine could've you know, the glucose monitor could read it back then. (3:44) So the next move was to the hospital.

Kelly (3:46) So I missed the beginning of third grade, I think, by two weeks. (3:50) But, yeah, I remember that day very vividly. (3:53) It's obviously very traumatizing being a kid Yeah. (3:57) And then having to learn how to take shots and all of that. (4:00) My parents, thank god for them, I mean, were amazing and and really did a lot of this in the beginning.

Kelly (4:06) I don't even know that I actually took my own insulin syringe for probably a year or so after diagnosis. (4:11) My parents were just very heavily involved. (4:13) So but, yeah, I'm I'm glad that those days were over and the lack of technologies, which we had nothing back then. (4:20) Mhmm. (4:20) Compared to now, I don't know how we made it through the eighties and the nineties, to be honest.

Kelly (4:25) It's very diff you know, very difficult time to be a diabetic, I think.

Scott Benner (4:28) Yeah. (4:29) What do you think the biggest change is? (4:31) Like, not just like, don't tell me it's a CGM or it's this. (4:34) Like, what is it for you personally? (4:35) Like, what has changed for the better for people with type one diabetes?

Kelly (4:39) Well, know, when I think about how we manage diabetes in the eighties and nineties, it just seems like a it's I mean, in retrospect, it seems like it was a disaster back then. (4:49) I mean, your your parents were handed a sliding scale to figure out, you know, how much insulin you're gonna need for carbs and all of this. (4:57) And, I think we took two shots a day back then. (5:00) There was no testing of blood sugar through, like, maybe as aggressively as we should have throughout the day. (5:05) I think we just did it before and after meals, and that was it.

Kelly (5:08) So it's the not not knowing, right, what your blood sugar is. (5:11) Like, we can just look down look down at our CGM and and see that, you know, right away. (5:16) I I I just could sometimes think it's amazing that we live through all of that because we just didn't have access to what we have access to now. (5:24) Yeah. (5:25) It almost seems like on some level, it wasn't, really the safest back then.

Kelly (5:29) You know?

Scott Benner (5:30) But what you it's what you had, though. (5:31) Right? (5:31) I mean, it's not

Kelly (5:32) like It's all we had. (5:33) Yeah.

Scott Benner (5:34) And so health wise, when you think of yourself at 20, did you think of yourself as unhealthy?

Kelly (5:43) I don't think I ever thought of myself as unhealthy, but I even in my twenties think that my level of care probably wasn't what it is now because being a college student, you know, I I don't think I was as focused. (5:56) I mean, I remember going to bed thinking, oh, I really should test my blood sugar, and I wouldn't. (6:00) You know? (6:00) And so we didn't have CGMs when I was in college either. (6:05) So, you know, there there were definitely some moments that gave me some wake up calls back then.

Kelly (6:12) I can remember one time waking up, and somehow I found myself in the basement of our home, but it was like I woke up as if I had just come out of a severe low glucose. (6:23) I was like, why am I sitting here? (6:25) What am I doing? (6:26) And so it was moments like that that really forced me to take better care of myself. (6:31) I'd say probably around the age of 25, I just got really serious about, okay.

Kelly (6:35) I need to go on an insulin pump, but I need to I need I need to make sure that I'm really taking care of myself. (6:39) I don't wanna wake up on the Basement Floor, you know, Mhmm. (6:42) Not really knowing where I am, what I'm doing, and somehow I miraculously came out of that on my own.

Scott Benner (6:48) What do you think happened at 25?

Kelly (6:50) I can only imagine it was another severe low. (6:53) Like, I never had to go to the hospital for a low. (6:55) There was one time where my father did drive me to the hospital, but I woke up kind of out of that state in the car. (7:02) And I remember thinking, what are we doing? (7:05) Where are we going?

Kelly (7:06) I'm in my pajamas. (7:07) I had a a little glass of juice in my lap, and my father says, you're not acting right. (7:11) I have to take you to the hospital. (7:12) I said, no. (7:13) I'm fine.

Kelly (7:14) Turn around. (7:14) I made him turn around. (7:16) But I think it was one of those moments, and maybe it was that moment, that just made me realize, like, you've gotta stop this. (7:22) Like, you've gotta figure out how to take better care of yourself or you're, you know, you're not gonna live with this. (7:27) You know?

Kelly (7:28) And I don't think I was ever I don't think I I would ever, like, fully neglected my diabetes. (7:32) I just think there were moments where I got very lazy with it, and that's what led, you know, to those sort of episodes. (7:37) So right around, I'd say, age of 25, I got serious and never had any any issues like that again.

Scott Benner (7:43) Yeah. (7:44) Do you have context for they say it takes into your mid twenties for your brain to fully form for you to be, like, you know, kind of a a a complete person. (7:53) So you had some impacts that kinda snapped you right, and then you got yourself together and never went back. (7:59) It didn't go backwards on you.

Kelly (8:01) Yeah. (8:02) Exactly.

Scott Benner (8:02) Awesome. (8:03) Were you married at that point or dating seriously? (8:05) Anything like that?

Kelly (8:06) I mean, I was so I mean, I graduated college around '22, and I got a job right away. (8:13) So, no, I didn't actually get married till I was about 33.

Scott Benner (8:16) Mhmm. (8:17) And

Kelly (8:17) I have two children and I had very successful pregnancies despite type one, I'm very grateful for that.

Scott Benner (8:23) Nice.

Kelly (8:24) You know, I think just having diabetes for thirty eight years, you know, it's even though I almost don't know life any other way because I've had this since I was, you know, seven years old, it's still a burden, I I feel. (8:37) I think it's just, you know, you can never, like, take a step away from diabetes. (8:41) And I think that's what led me down the path of trying to explore what clinical trials are out there. (8:46) And it really took me moving to Illinois. (8:48) I mean, I lived in the Northern Virginia area for about thirty three years.

Kelly (8:53) Never really researched this. (8:56) I had heard about different things happening, but didn't get really serious about researching until I moved. (9:01) So when I moved to Illinois, last year, I was amazed to discover that there are several research hospitals in the Chicago area as well as one in Madison, Wisconsin, and all of them had been doing islet transplants for years, I mean, decade plus. (9:17) And I thought, this is incredible. (9:18) How come I never knew this?

Kelly (9:20) So I contacted all of them and was trying to see if I would be a candidate for a clinical trial. (9:27) So at first, the first one, one of I would say one of the hospitals I didn't qualify because, you know, all the criteria is different for all the studies, obviously. (9:38) So some, have to have a certain blood type, which I didn't have. (9:41) Others, you know, there are BMI requirements, and things like that. (9:46) I was able to get in touch with the University of Illinois in Chicago.

Kelly (9:50) The first path I tried to go down was the islet cells where they harvest the cells from a cadaver pancreas. (9:57) That didn't work out because we actually had to go through insurance for that. (10:01) That that particular one wasn't even considered a clinical trial. (10:04) Like, they've been doing this

Scott Benner (10:05) Mhmm.

Kelly (10:06) For years. (10:07) And so if your insurance covers the procedure, you can, you know, have this done. (10:11) Fortunately, my, my insurance company told me they don't cover islet cells, and I almost laughed.

Scott Benner (10:16) I was like, oh, of course, you won't cover

Kelly (10:17) a cure. (10:18) I'm like, why would we do that? (10:20) Because my understanding is you leave hospital, and you're essentially not diabetic anymore. (10:25) I mean, it it works that fast. (10:26) Right?

Kelly (10:27) It's it's incredible. (10:29) So, downside, obviously, to doing the cadaver route is you do have to take immunosuppressant drugs, the rest of your life. (10:36) So there is, you know, there are some pros and cons to be weighed there, of course. (10:40) So after that kinda fell apart, I waited, and I was back in touch with the University of Illinois again and learned that they were gonna have another they were gonna actually have a clinical trial opening up in I in August of of this year. (10:56) And I was able to get in touch with the research team, and they said that they thought I might be a good candidate.

Kelly (11:01) So we went out, and I had all kinds of tests done. (11:05) And they said, that I qualified. (11:10) And so I had my transplant surgery on October 14, and what made this different was that this particular study, they took islet cells from pigs. (11:24) So it's porcine islets. (11:26) This has been, effective in primate studies, but we haven't really studied this enough in humans.

Kelly (11:33) I'm actually the second person in The United States to do a porcine eyelid, which is pretty remarkable.

Scott Benner (11:39) It

Kelly (11:41) has been done in other countries. (11:43) I think New Zealand was one of the first. (11:45) It's been done in Argentina, Germany, the list goes on, but it's it's still being studied. (11:50) So this is a, you know, this is an efficacy and safety study. (11:53) So I got a certain amount of porcine islets, and the surgeon believed that in a couple of weeks here, I should start to see some changes in insulin requirements.

Kelly (12:02) So that's very exciting. (12:03) Whether this is going to lead to full insulin independence is still unknown. (12:10) It certainly is a possibility, but we just don't know.

Scott Benner (12:13) So okay. (12:14) Let me ask a couple of questions.

Kelly (12:15) Sure.

Scott Benner (12:17) Me start at the beginning here so I can piece my way through it. (12:19) How long ago did you have the procedure?

Kelly (12:21) On October 14.

Scott Benner (12:22) Okay. (12:23) So that's a month ago.

Kelly (12:24) Yes.

Scott Benner (12:24) Okay. (12:25) And they give you it's pig cells cells from a pig. (12:32) Okay. (12:32) Yes. (12:32) You need anti rejection meds for that?

Kelly (12:34) You do not. (12:35) That's what makes this

Scott Benner (12:36) Why is that?

Kelly (12:37) So different. (12:38) So the cells are encapsulated

Scott Benner (12:40) Oh, okay.

Kelly (12:41) Which you've probably heard

Scott Benner (12:42) of that. (12:43) Right?

Kelly (12:43) Yeah. (12:44) That that's why.

Scott Benner (12:45) So it's in in one of those pouches?

Kelly (12:47) It's actually not in a pouch. (12:49) So this also fascinated me. (12:50) That's what I thought we were gonna do. (12:52) I actually thought they'd be in a pouch. (12:53) They put them in your, Omentum, which I had to Google.

Kelly (12:57) I didn't even know this was a body part that we had. (12:59) Okay? (12:59) So this is a little, like, fatty tissue in the upper abdomen area, and it kinda drapes over your intestines like a curtain or an apron.

Scott Benner (13:08) K.

Kelly (13:10) This area is being utilized for islet cell well, I don't know about cadaver, but certainly for porcine. (13:18) It's a protected area and, rich in blood supply, and, it's it's known to be an area that that I guess, these cells can thrive. (13:28) So that's why they're starting to to do them in the momentum.

Scott Benner (13:30) Okay. (13:32) So they put them in there, and it's been a month. (13:35) Have you have you noticed any difference at all? (13:41) You've probably heard me talk about US Med and how simple it is to reorder with US Med using their email system. (13:48) But did you know that if you don't see the email and you're set up for this, you have to set it up.

Scott Benner (13:52) They don't just randomly call you. (13:53) But I'm set up to be called if I don't respond to the email because I don't trust myself, a 100%. (14:00) So one time, I didn't respond to the email And the phone rings at the house. (14:04) It's like, ring, you know how it works. (14:06) And I picked it up.

Scott Benner (14:07) Was like, hello? (14:07) And it was just the recording. (14:08) It was like, US Med. (14:10) Doesn't actually sound like that, but you know what I'm saying. (14:12) It said, hey, you're, I don't remember exactly what it says.

Scott Benner (14:14) But it's basically like, hey, your order's ready. (14:16) You want us to send it? (14:17) Push this button if you want us to send it. (14:19) Or if you'd like to wait, I think it it lets you put it off, like, a couple of weeks or push this button for that. (14:24) That's pretty much it.

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Scott Benner (14:46) Even that new islet pump. (14:48) Check them out now at usmed.com/juicebox or by calling (888) 721-1514. (14:56) There are links in the show notes of your podcast player and links at juiceboxpodcast.com to US Med and to all of the sponsors. (15:03) This episode is brought to you by Omnipod. (15:06) Would you ever buy a car without test driving at first?

Scott Benner (15:09) That's a big risk to take on a pretty large investment. (15:12) You wouldn't do that. (15:13) Right? (15:14) So why would you do it when it comes to choosing an insulin pump? (15:17) Most pumps come with a four year lock in period through the DME channel, and you don't even get to try it first.

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Kelly (16:05) Not yet. (16:06) But they told me that I shouldn't really see any changes for about six weeks.

Scott Benner (16:11) Six weeks.

Kelly (16:11) And so I to be honest, I haven't seen anything yet. (16:15) So I'm just it's sort of like diabetes as usual. (16:17) Right? (16:18) I haven't seen any change just yet.

Scott Benner (16:20) My gosh. (16:21) But you're the second person. (16:23) So I was gonna say if you talked to anybody else that's had it done, but there was one other person.

Kelly (16:27) One other person, in The US study. (16:30) Yes. (16:30) And if you look at the studies that have happened overseas, they're mixed in terms of success rates. (16:36) Right? (16:36) So, you know and each study was slightly different, so the the goals of each study are are different.

Kelly (16:42) But this clearly is an an area that is still being, well, you know, studied. (16:47) We I don't know that anyone has gone to full insulin independence, but they certainly have had, success, you know, in the area of, like, better control after

Scott Benner (16:57) Mhmm.

Kelly (16:57) Meals. (16:58) Right? (16:58) Better like, less spikes after eating, things like that. (17:01) So

Scott Benner (17:03) Have there been any changes? (17:04) If I yell suey, will you come running? (17:06) Anything like that? (17:08) Sorry. (17:08) That's a that's a bad pig joke.

Scott Benner (17:11) How long was the procedure? (17:13) How long was it to recover from it?

Kelly (17:15) This was a very easy surgery. (17:17) So it was done, laparoscopically. (17:19) They made four tiny incisions, probably a centimeter, around my abdomen. (17:24) They sort of said, imagine, like, a funnel. (17:26) Right?

Kelly (17:26) They're funneling the cells into your omentum, and, and that was it. (17:31) And I was in the hospital for two days. (17:33) Recovery was very easy. (17:35) I didn't need any pain medicine. (17:36) I may have taken an ibuprofen on, you know, the first day after it was released, but nothing beyond that.

Scott Benner (17:41) Really like that. (17:42) Just easy. (17:42) What's the doctor's name?

Kelly (17:44) So the doctor, the transplant surgeon that did my surgery is doctor D'Coco. (17:50) He was amazing. (17:52) And, really, the entire research team there is amazing. (17:55) I still go in once a week for follow-up care, so they do a lot of blood work. (17:59) They're also doing, like, C peptide tests, right, to see if there's any activity and things like that.

Kelly (18:04) So I'll be going to every other week appointments pretty soon. (18:08) But, yeah, I'll be I'll be followed essentially the rest of my life as part of this study.

Scott Benner (18:12) So gonna say what's your responsibility to the study after that?

Kelly (18:17) So the visits will slow down a little bit. (18:20) You know, maybe it'll be once a month for a while, and then eventually, think it may be even twice a year or something like that. (18:26) But, yes, I will be closely monitored for the rest of my life.

Scott Benner (18:30) Okay. (18:31) Can you tell me have you given thought to if you wake up six weeks in, eight weeks in, twelve weeks in, there's no change. (18:39) Do you think you'll be disappointed, or do you think you'll have just been happy to help?

Kelly (18:43) You know, of course, there'll be, like, a little disappointment, but I I went into this knowing that there's a big question mark around whether this is gonna work fully. (18:53) My hope is that maybe this will lead to, you know, more opportunities for other type ones. (19:00) I mean, certainly in the cell therapy space, there's so much being done. (19:03) It's incredible. (19:04) I really didn't know until I spent I mean, I spent probably about three or four months just diving into all the hospitals in my area that were doing islet cell transplants, and I just couldn't believe how much I didn't know.

Kelly (19:15) So there's a lot happening. (19:17) I met I also met I don't know if you've heard of doctor Oberholzer. (19:22) He's a Swiss transplant surgeon who's been heavily involved in the University of Illinois in Chicago. (19:28) He's the one that started the diabetes I'm sorry, the Chicago Diabetes Project, which you may have heard of.

Scott Benner (19:33) I have. (19:33) Yeah.

Kelly (19:34) Yeah. (19:34) He did his first eyelid transplant in 1996, and I've read a lot about him. (19:39) I've just been so amazed by his work, which has been solely focused on

Scott Benner (19:44) a

Kelly (19:44) cure, like finding a cure, developing cures. (19:47) So this is his his whole life's work. (19:49) Well, he happened to be in Chicago while I was there and came just walked into my hospital room the day of surgery, and I couldn't believe it. (19:58) I was like, wow. (19:59) You're here.

Kelly (20:00) It's like, I had no idea he was gonna be there. (20:02) So it was wonderful to meet him and talk to him about these procedures and just all that is being done in the islet space. (20:09) It's it's really amazing. (20:11) So I I do believe that there'll be a cure for us in the near future. (20:14) I know a lot of people think that's just not that'll never happen.

Kelly (20:17) But these cell based therapies, there's so much happening right now in this space that I I think it will be available to most of us in the future.

Scott Benner (20:24) No. (20:24) That'd be crazy. (20:25) Yeah. (20:27) What what did you have to do to qualify? (20:29) Is there anything that would have disqualified you?

Kelly (20:32) Yes. (20:33) So each study has, you know, slightly different criteria. (20:36) This one, you had to meet certain things. (20:38) And I I I don't recall the entire list, but I know a big one was, like, hypoglycemia. (20:45) Like, if you don't feel when you're low, that certainly is a is a factor that that helped me qualify because I I do think I have lost sensitivity over the years, which is not uncommon when you've had diabetes for a long time.

Kelly (20:59) I could be, you know, out doing some activity, and maybe I don't recognize this. (21:04) I don't feel it right right away. (21:06) I'm waiting like, have to wait for the CGM to alert me.

Scott Benner (21:09) Mhmm.

Kelly (21:09) So that's certainly not a a great thing. (21:11) There's some other factors, like, you have to make you have to be a certain weight, you know, and BMI is a factor in these studies, and a couple of other things. (21:21) But but each each one, like I said, has has slightly different criteria.

Scott Benner (21:25) Yeah. (21:26) Okay. (21:26) Alright. (21:27) What made you wanna come on the podcast, actually? (21:29) Like, that that's interesting because you you scheduled this, and you don't know what the outcome's gonna be yet.

Scott Benner (21:35) So Yeah. (21:35) What's what's your hope in in talking to people?

Kelly (21:37) Well, what I was hoping to to share is that there is a lot there's a lot of work being done right now trying to develop a cure for diabetes. (21:46) It's been and it's been going on for many, many years, and I I just think that there are a lot of type ones like me out there who thought, I'm gonna have this forever. (21:54) You know? (21:55) Yes. (21:55) There's studies being done, but that's never going to apply to me.

Kelly (21:59) It's not something I'm ever gonna be able to participate in. (22:01) And I would encourage type ones to really especially if you live in close to a big city like Chicago or and I'm and, I mean, these are being done all over the country. (22:10) University of Miami does islets. (22:12) I believe the University of Virginia does islets. (22:14) So this is happening all over the country, I think even UCLA.

Kelly (22:18) Just do your research. (22:20) And if it sounds like something you'd be interested in participating in and maybe you'd have the opportunity for a little bit of a break from diabetes, you know, you'd be surprised. (22:30) I didn't think that I was gonna qualify for any of these. (22:33) I do feel fortunate that I was able to get into one. (22:36) And even if it, know, let's say, only works 50% of the expectation.

Kelly (22:41) Right? (22:41) Like, maybe I don't have full insulin independence, but even to get kind of that break from, okay. (22:46) I can eat a meal, I don't

Scott Benner (22:47) have to worry about where am I gonna be two hours from now or three hours from now.

Kelly (22:51) Right? (22:52) Like, just having, just a little bit of a break from type one would be absolutely amazing for me.

Scott Benner (22:57) Let's talk about that a little bit. (22:59) After nearly four decades of type one diabetes, like right? (23:02) Like, what is it about your experience that made you think, I'm just gonna go ask somebody to cut my belly open and stuff some some pig cells in here and see if that doesn't help me? (23:13) You know what I mean? (23:13) Like

Kelly (23:13) Like, what encouraged me to go this route?

Scott Benner (23:16) Yeah. (23:17) What's the long term implications that make you think of because there are people out there who've done transplants. (23:22) Right? (23:23) Like, often they're in in poor health and maybe makes more sense. (23:26) But even when you tell somebody, like, you have to go on immunosuppressant, like, that's a big thing.

Kelly (23:31) It

Scott Benner (23:31) is. (23:31) And to have somebody hear all the possible side effects and problems with being on an immunosuppressant and then them still say, like, yeah. (23:38) Let's do it. (23:39) Like, something's had to have happened and happened over and over again that makes them say, like, well, let's just throw caution to the wind and try this thing now. (23:46) I'm wondering Yeah.

Scott Benner (23:47) About that for you.

Kelly (23:49) I think for me, it's just there is a certain level of exhaustion with living with this. (23:53) Right? (23:54) I wanna be able to just go on the, you know, Peloton and not have to worry about, am I gonna drop low, or am I gonna have to eat before, you know, I get on the bike? (24:03) And it's just all of those decisions that you're making all day long can be so exhausting. (24:08) And I understand why people, you know, say they have diabetes burnout.

Kelly (24:12) I think that's a very real thing for a lot of us, especially when we've had it for, you know, in my case, nearly four decades.

Scott Benner (24:17) For sure.

Kelly (24:18) You know, I'm in great health. (24:19) I've had no complications from diabetes. (24:21) Thank goodness. (24:22) But but it's just it's just one of those things where it's it's It's enough already. (24:26) Full time job.

Scott Benner (24:27) Yeah. (24:27) Like, that's enough of this. (24:29) I'm good.

Kelly (24:29) Yes. (24:30) It's like, sign me up for one of these, you know, options. (24:33) Let's see if this works. (24:35) I I'll be honest. (24:36) I think I probably would have gone down the route too of doing the cadaver eyelets had I qualified or, you know, had my insurance been willing to pay for the procedure just because I would love to know what life is like without this.

Scott Benner (24:48) You know? (24:49) You're you're just desirous of anything happening that's different. (24:52) Seriously. (24:53) Yeah. (24:53) You're just like like, okay.

Scott Benner (24:54) I'm ready for something different now. (24:55) Let let's be done. (24:56) Yeah. (24:56) Yeah. (24:56) So would you try something again?

Scott Benner (24:58) Like, say this doesn't work. (25:00) Would and they called you six months from now and they're like, hey. (25:02) We got a, I don't know, dog sells this time. (25:05) Let's go again. (25:06) Would you be like, like, right on.

Scott Benner (25:07) Let's go.

Kelly (25:08) Yeah. (25:09) I think if I absolutely would consider it again. (25:13) I mean, in this case, I felt like the worst case scenario with this procedure is that it just doesn't work. (25:17) Right? (25:17) There were no I didn't have to you know, you always wanna weigh the the risks and the benefits of these things, of course.

Kelly (25:25) But, yeah, I think if it's the right procedure, as I felt this one was, I probably would consider it again.

Scott Benner (25:31) Yeah. (25:31) Plus that curly tail is not that bad. (25:34) I

Kelly (25:36) my kids would have loved probably if I dressed up as a a pig this year

Scott Benner (25:40) for Halloween. (25:41) Are they are they how old are your kids?

Kelly (25:43) 11 and four.

Scott Benner (25:45) Oh, 11 and four? (25:46) Yeah. (25:47) Look at you. (25:47) You had one when you got married and one after a wedding where you got drunk. (25:52) What happened there?

Scott Benner (25:52) Was it No.

Kelly (25:53) No? (25:53) You know, after my first, I I just thought I was good with one child. (25:58) I really didn't think I was gonna have any more kids. (26:01) And then, you know, after they maybe she was around five years old. (26:05) I think you forget how hard it is in the beginning.

Scott Benner (26:08) I haven't forgotten.

Kelly (26:09) You're like,

Scott Benner (26:09) you know, I

Kelly (26:09) can do this again.

Scott Benner (26:11) I haven't forgotten. (26:12) I have a I have a kid with diabetes. (26:14) I I I'm I'm aware every day. (26:17) She somebody said to me recently, like, you know, what is it you're waiting for? (26:21) And I was like, for her to get to 25.

Scott Benner (26:22) I because it's funny that you said 25 because I I mean, all the stuff you've just talked about. (26:27) Right? (26:27) That happens to everybody. (26:29) Happens to my daughter. (26:30) It's gonna happen to if you're listening, it's gonna happen to your kid.

Scott Benner (26:33) Like, there are people who I think outwardly appear to be handling it better, but I don't know that it doesn't impact everybody the same way even if they don't show it. (26:42) And Yeah. (26:43) You know, and, it's just there's parts of diabetes that Arden just skates through. (26:48) And there's Yes. (26:49) And there's parts of it and I and I don't even know if I should say diabetes, like autoimmune.

Scott Benner (26:53) Like and there's parts of it that, like, are hard for. (26:56) And Absolutely. (26:57) And and, you know, and it just it's I don't know what to do. (27:00) Like, you know, you so you try to be supportive, but people aren't always ready for that. (27:04) You you know, you can't force people to you can't force people to do anything.

Scott Benner (27:09) Mhmm. (27:09) You know, you it's easier when they're kids because you say, like, here, do the thing and I'm taller than you, so do it. (27:15) And they're like, right on. (27:17) And then they just do it. (27:18) Right?

Scott Benner (27:18) But people start to grow and, you know, they their own struggles and and their own mindset and suddenly, you're you're just an you're an opinion. (27:27) You're not a Mhmm. (27:29) You're not the end all be all anymore. (27:31) So anyway, yeah, I say keep them little because they're easier that way.

Kelly (27:34) And I think maybe that was one benefit to getting type one as a child. (27:38) And granted, I don't wish this upon anyone, especially children, but, you know, it's it's it's as if I don't really know life any other way. (27:46) Right? (27:46) I've had this for so, so long. (27:49) But I because of that, I I like I said, I am I'm just open to you know, if there are if there is the possibility to get rid of it, I I'm certainly open to it.

Scott Benner (28:00) Well, sure. (28:01) Because you're sure you don't have an experience to know it another way, but you can imagine it another way.

Kelly (28:06) Absolutely.

Scott Benner (28:06) You look at other people who don't have it and you go, that seems better.

Kelly (28:09) That would be nice.

Scott Benner (28:10) Yeah. (28:10) Yeah. (28:10) Right. (28:11) Yeah. (28:12) And your husband did your husband have any autoimmune issues or anything going on with him?

Kelly (28:15) None. (28:16) And there's really none in my family either.

Scott Benner (28:18) Really?

Kelly (28:18) There I don't have any cousins or siblings. (28:22) No one has type one, so that's just a mystery. (28:25) Celiac. (28:25) No celiac.

Scott Benner (28:27) Eczema. (28:29) No. (28:29) The the Michael Jackson thing, vitiligo. (28:32) No. (28:32) Raynaud's, cold hands.

Scott Benner (28:33) Anybody have RA? (28:35) No. (28:36) I'll be damned. (28:36) I know. (28:37) You just got super wonder.

Scott Benner (28:39) So what

Kelly (28:39) was the trigger? (28:40) Was it a virus? (28:41) You know, some environmental factor? (28:43) You it will never know. (28:45) Right?

Scott Benner (28:45) Did you have a virus before you were diagnosed?

Kelly (28:47) I certainly don't remember if I did.

Scott Benner (28:50) Yeah. (28:50) It would be like a nothing before you had diabetes, nobody paid attention to health. (28:54) You're either sick or you were getting better or you're Yes. (28:56) Or you weren't sick. (28:57) Nobody was, like, tracking anybody's health in this in the eighties.

Scott Benner (29:00) Yeah. (29:01) Yeah.

Kelly (29:01) I don't I certainly don't remember Yeah. (29:03) What could you know, a virus or what else could have possibly triggered it.

Scott Benner (29:07) Yeah. (29:07) No. (29:07) I hear you. (29:08) Okay. (29:09) So oh, Do you ever think about testing your kids for autoantibodies?

Kelly (29:15) I do. (29:16) I've done the trial net. (29:18) In fact, I did it when they were both two, and I just ordered the kits again. (29:23) They there was a period of time, I guess, where you could not get the kits. (29:27) I think there was maybe had something to do with fund the lack of funding in this study, but now they're available again.

Scott Benner (29:32) Yeah.

Kelly (29:32) So I was able to order them, and I'll do another. (29:34) Thankfully, they were negative when they were two, so I'm certainly hopeful they'll all you know, be negative again. (29:40) But yes. (29:41) I I think I'll probably always do trial med as long as I'm, you know, able to I don't I don't know how how often they recommend we do it. (29:49) That'll have to I'll have to look up again, but they they certainly will were willing to send the kits again.

Kelly (29:54) So I thought, okay. (29:55) Great. (29:55) Let's do it.

Scott Benner (29:56) Very nice. (29:56) So I'm glad you get a little peace of mind from that. (29:58) That's nice. (29:58) Yeah. (29:59) How do you manage right now?

Scott Benner (30:00) Are you a pump, CGM, MDI? (30:03) What do do?

Kelly (30:03) Omnipod five, and I'm using the Dexcom g six. (30:09) The hospital actually gave me a g seven, so the hospital and their research partner who was in Japan is so it's like a blinded CGM. (30:19) I can't see

Scott Benner (30:19) Right. (30:20) Right.

Kelly (30:20) The numbers or anything like that, but I am carrying their device around and It's recording. (30:25) Seven.

Scott Benner (30:25) Yeah. (30:26) And it's recording data for them. (30:27) They'll download it

Kelly (30:28) later. (30:28) Right.

Scott Benner (30:29) Yeah. (30:29) Yeah. (30:29) I remember those. (30:30) That's how you used to have to get a CGM, by the way. (30:32) Oh.

Scott Benner (30:33) Back in the day, you had to wear a blinded CGM, then they went back and looked at your numbers and then told you if you were allowed to have one.

Kelly (30:38) Oh my gosh. (30:39) Wow. (30:39) I remember that.

Scott Benner (30:40) Yeah. (30:40) That was that was fun. (30:41) We did that one, you know, where you're just, like, hoping somebody gets low so that you'll get an excuse to get deceased.

Kelly (30:48) Qualify?

Scott Benner (30:49) I mean, really. (30:50) And that's a horrible feeling. (30:51) Like, you slap it on, you're like, I hope she I hope these lows we keep telling her about happen while this thing's recording.

Kelly (30:56) Yeah.

Scott Benner (30:56) Obviously, we didn't make her low on purpose, but, like, it was like

Kelly (30:59) No. (31:00) These tools are so essential. (31:01) They they should never be a it's a shame, and I I won't go all political on you, but it's like every diabetic should be able to access the best technology that there is out there for this. (31:13) And I don't know how I lived so many years without a CGM.

Scott Benner (31:15) Well, obviously

Kelly (31:16) I it's really a miracle.

Scott Benner (31:17) How long have you had CGM and an algorithm? (31:19) Like, I mean

Kelly (31:20) With the algorithm, not that long. (31:22) Because before the Omnipod five came out, I was using whatever the first edition Omnipod was. (31:29) I didn't have the dash.

Scott Benner (31:31) Oh, you had the you had the old the original pod? (31:33) You went from the original pod to the five?

Kelly (31:35) Yes. (31:35) Really?

Scott Benner (31:36) Yeah. (31:36) What was that called?

Kelly (31:38) I forget what it was called. (31:39) Someone asked me this the other day. (31:41) I can't remember. (31:41) But I had that for probably a decade.

Scott Benner (31:44) Yeah. (31:46) Yeah. (31:46) How was your outcomes during that decade?

Kelly (31:49) You know what's funny? (31:51) My a one c was better on the old school one than it is on the Omnipod five, interestingly enough.

Scott Benner (31:57) Were you more focused on it?

Kelly (31:59) I wish I could tell you. (32:00) I think if there is a downside to the Omnipod five, in my opinion, is I do not like there are times where I think it does not correctly estimate or or predict that you're going low, and it will cut me off for, I think, far too long. (32:13) And then that sends you back up to, like, the January or January sometimes. (32:17) That particular feature is not my favorite.

Scott Benner (32:20) Okay.

Kelly (32:21) I didn't have that problem before. (32:23) You know, I would bolus and wait the two, three hours, and if I needed to correct again, I would. (32:28) But, yeah, I I think my my a one c has certainly been higher on the fives, which I bet I don't love.

Scott Benner (32:33) Okay. (32:34) Well, I think they're working on another version of it right now. (32:38) So I think it's in the testing phase.

Kelly (32:40) God. (32:40) That would be great.

Scott Benner (32:41) Yeah. (32:41) Like a like a two point o kind of a feeling. (32:44) Yeah. (32:44) But I was wondering, like, because it's telling you it's taking care of things now, are you not looking in on it as much and helping it? (32:53) Do you know what I mean?

Scott Benner (32:54) Like, do you ever just think, well, I probably need more insulin here. (32:56) I'll I'll bolus again, or do you just wait for it?

Kelly (32:59) I admit I am guilty of overriding some of the decisions that the vibe is making. (33:06) Mhmm. (33:07) And I love my endocrinologist. (33:08) He's amazing. (33:09) It sounds like you just have to trust it.

Kelly (33:11) You have to give it give it more time and but I I do. (33:14) I have moments where I'm like, okay. (33:16) I'm tired of this. (33:17) I'm tired of waiting. (33:18) I'm just gonna Yeah.

Kelly (33:19) Take a half unit or a unit and see where we land.

Scott Benner (33:21) I think you should, first of all. (33:22) But, like Yeah. (33:23) You know, at the same time, I was wondering if you weren't doing that. (33:26) But you are. (33:26) You're Yeah.

Scott Benner (33:27) I understand. (33:27) Involved. (33:28) Yeah. (33:28) Yeah.

Kelly (33:28) Manipulated at times. (33:30) Yeah.

Scott Benner (33:30) Is it easier? (33:32) Like, is it enough to take away whatever made you decide to do the cell transplant? (33:39) Like, you know, if if it gets better and better, you know, if these are

Kelly (33:42) Oh, yeah. (33:42) If it gets better, and I think there's a possibility. (33:45) So let's say in a month, I start seeing some changed insulin requirements, you know, meaning and and this is what's also being closely tracked by the hospital. (33:52) We go over how much you know, what is your daily insulin? (33:56) We'll look at it week to week because that's how we're gonna be able to tell if things are changing.

Kelly (34:00) Am I taking less insulin? (34:01) Right? (34:02) Are we seeing anything on a C peptide test? (34:04) Like, these sorts of things. (34:06) So if we start if the islets start doing their job and we're making insulin, I won't be taking as much, synthetic insulin.

Kelly (34:14) So maybe the Omnipod five will will work out even better for me in that situation.

Scott Benner (34:19) Right.

Kelly (34:19) But, yeah, time will will tell. (34:21) You know, I'll when the surgeon from Switzerland came to see me in the hospital, the one who I mentioned, runs the Chicago Diabetes Project, he mentioned to me that he that I should expect to see some change in six weeks. (34:35) So if that's the case, we're talking about two weeks from now.

Scott Benner (34:37) Two more weeks.

Kelly (34:38) So I'm excited to see if that's the case. (34:41) He certainly seemed confident that I was gonna see some level of change.

Scott Benner (34:44) So Yeah.

Kelly (34:45) That gives me hope. (34:46) He's also amazing, and I would recommend that every type one look him up and get to know him and look at the Chicago Diabetes Project. (34:53) His name is doctor Jose, Ober Bolzer. (34:56) He's just an amazing human being. (34:58) His entire life is is dedicated, towards developing cures.

Kelly (35:03) He runs in the Chicago, marathon every single year. (35:07) They raise money, and that money goes directly to Cure Focus Research. (35:11) And what I found amazing about him is he ran the Chicago marathon this year on a Sunday and comes to see me in the hospital two days later. (35:19) He just walked in my room, I was like, wow. (35:22) This is I had no idea that he was there, that he would even stop by to see me.

Kelly (35:26) So I was really, I was really taken aback by that.

Scott Benner (35:29) Oh, I don't know. (35:29) You're probably pretty famous in this. (35:31) You're the second person that did it with him.

Kelly (35:33) That was a really special, surprise, you know, to see him. (35:37) Felt, you know He probably opened

Scott Benner (35:39) that he probably opened that door and was like, oh, she's still alive. (35:41) Good. (35:41) That's awesome. (35:43) Oh, god.

Kelly (35:45) Yeah. (35:46) No. (35:46) I definitely feel a deep sense of gratitude to him and and really the entire transplant team in Chicago for their work because it's now they've done some amazing work, towards, you know, a cure for all of us.

Scott Benner (35:57) Did they give you any idea did they say, like, listen. (35:59) If this doesn't work, this is why it doesn't work. (36:02) Like, is there how much of this do they understand? (36:04) Or do you think they're just like, I wonder what's gonna happen now?

Kelly (36:07) Well, you know, they're so they there is data, from the studies that were done in other countries. (36:14) The first one, I think, was New Zealand. (36:16) So this is this was first done, I believe, in 2014.

Scott Benner (36:19) Mhmm.

Kelly (36:20) You know, they work with their their research partners in New Zealand and in Japan and probably other places. (36:25) So I know that this has been well studied. (36:27) It just hadn't hadn't been approved. (36:30) You know, they had to go through FDA approvals and what have you to be able to do this in The United States. (36:35) So this is the first time it's being done here.

Kelly (36:38) But, you know, it has been done elsewhere. (36:41) So it's and it's still being studied, so we really don't know.

Scott Benner (36:44) Do you know if it's ramping up? (36:45) Are they gonna start doing more people or more cells?

Kelly (36:49) Clinical trial is still open. (36:50) So as far as I understand, people could apply. (36:54) I'm not sure how many patients they're gonna recruit for this, and my understanding is that there's two phases. (36:59) So I'm in phase one, and we got a certain amount of islets. (37:02) Phase two, they're supposed to those patients are gonna get a little bit more islets.

Kelly (37:06) So, you know, this is all part of testing the safety and efficacy of these cells. (37:12) So I think this the second round of patients will get a, you know, a bigger batch of islets.

Scott Benner (37:17) Does the, the pig get the liver? (37:19) Do they

Kelly (37:20) So this is the part that I admit makes me sad.

Scott Benner (37:23) Oh, he's he's chop he has pork chops now? (37:25) Is that right?

Kelly (37:25) You know, because I I don't know, and don't quote me on this, but I had heard that somewhere between twelve and fifteen baby pigs are taken for one

Scott Benner (37:34) transplant. (37:34) So,

Kelly (37:35) you know,

Scott Benner (37:35) I know.

Kelly (37:36) And I do I I have a soft shopper animal, so, of course, it makes me feel bad. (37:40) And part of me is, like, I really wanna get rid of diabetes. (37:42) So I'm gonna touch on that issue right now. (37:45) Kelly's

Scott Benner (37:46) like, I could alright. (37:47) I'll do it. (37:48) She's like, I don't wanna kill him, but I'm okay with it. (37:50) I just Yeah.

Kelly (37:51) I know. (37:52) It took me a while to accept that this is what I this is the road we're we're taking. (37:56) Okay?

Scott Benner (37:56) Do you have any idea how they came up with pigs? (37:59) Like, why why pigs?

Kelly (38:00) Well, I know that that we have used pigs for other things. (38:05) You know, they do, heart valve replacements.

Scott Benner (38:07) Yeah. (38:07) No. (38:07) I just didn't know if

Kelly (38:08) they Yeah.

Scott Benner (38:09) Like, told you I you know what? (38:10) The the greatest thing about your story so far is that it feels like you just got to a point where you were like, pig stuff? (38:15) Whatever. (38:16) I'm not gonna ask a ton of questions here. (38:18) Like, let's go.

Scott Benner (38:19) Like, really?

Kelly (38:20) There may be some truths.

Scott Benner (38:22) Oh, no. (38:22) No. (38:22) I heard it. (38:23) Yeah. (38:23) You heard it in your voice a couple times.

Scott Benner (38:24) I heard in your voice at one point because you said something about, like, I had to look it up. (38:29) It it was about the omentum. (38:30) You're like

Kelly (38:30) The omentum. (38:31) I didn't even know we had that.

Scott Benner (38:33) You sat in a room and someone was like, we're gonna put some slices in you and stick some pig cells in your omentum. (38:37) And you were like, rock and roll. (38:38) Let's do it. (38:40) Sign me up. (38:41) I feel like if they would have said, we're gonna cut off your big toes and stick them in your ears, and it might lower your insulin needs, you would have been like, I'm okay.

Scott Benner (38:50) Yeah. (38:51) Tell you. (38:51) They're I

Kelly (38:51) would cons they're definitely I would consider a lot at this point.

Scott Benner (38:54) But that's the that's the part I still can't I don't feel like I've dug into. (38:58) I don't feel like I've gotten to it yet. (38:59) Like, why why? (39:01) Like, why do you feel that

Kelly (39:03) Why you wanna lose tabs?

Scott Benner (39:04) Great. (39:04) Aside of the obvious idea that I don't want you to have type one diabetes, and you don't want that, and I don't want my daughter to have like that. (39:10) That aside, but there's something fun you've been doing it for four decades. (39:15) Like, there's

Kelly (39:15) something burnout. (39:16) You know? (39:17) You're tired you're tired of it. (39:18) I'm tired of making many decisions all day long about what to eat, how much insulin does it take. (39:24) Okay.

Kelly (39:24) I wanna exercise now. (39:25) But if I lift weights, I'm gonna go high. (39:27) If I do cardio, I'm gonna go low. (39:29) Do I need to eat a snack before this? (39:30) Does that have do I have to accompany that with protein to keep the blood sugar stable?

Kelly (39:34) It's like all those many decisions are just so exhausting all day long.

Scott Benner (39:37) Okay. (39:37) It's just you've done it one too many times.

Kelly (39:40) Oh, yeah.

Scott Benner (39:40) Like but it's the repetition of something. (39:43) Right? (39:43) Like, it just

Kelly (39:43) Of course. (39:44) It's the repetition. (39:45) And I just go back to, you know, wouldn't it be great to just have this burden, you know, lifted? (39:50) It's like it is a burden. (39:52) It's it's another, you know, you have a full time job.

Kelly (39:55) You're a mom. (39:56) And then, you know, I feel like diabetes is often your third, you know, full time job.

Scott Benner (40:00) Right. (40:00) Right. (40:00) Right.

Kelly (40:01) Really is. (40:01) And it's

Scott Benner (40:02) I hear it. (40:03) I hear you.

Kelly (40:03) And look. (40:04) We have technology that is amazing. (40:06) Thank god. (40:06) We're not where I was in the eighties and nineties with nothing, right, to manage us. (40:10) We have great tools now, which is wonderful.

Scott Benner (40:12) Yeah.

Kelly (40:13) But they certainly, you know, don't replace

Scott Benner (40:17) Yeah. (40:17) A normal life. (40:18) Just a regular life where you don't have to, like, think about this stuff. (40:21) So

Kelly (40:21) Yes.

Scott Benner (40:22) Dig into your personality for a second because I just got done recording with a lady who's I I asked her a similar question from a different perspective because she's just one of those people who's like, no. (40:31) It's all fine. (40:32) I'm good. (40:33) Like, you know what I mean? (40:33) Like, she's had it, like, fifteen years longer than you, and she's just and I I I as I spoke to her, was like, is that your personality?

Scott Benner (40:41) Have you always been upbeat like this, or do things not bother you? (40:44) Like, that guy so my question back to you is is, like, does this make sense with your personality, or is it just such a thing that's overpowering who you are even? (40:52) And you're just like, I have to get rid of this somehow.

Kelly (40:55) Oh, that's a tough one. (40:57) I just think I there's a part of me that has this desire to continue to pursue options. (41:03) So if there are options out there and then right now, it's clinical trial because I would have certainly taken the cadaver path, but doing that, I would have been on low dose immunosuppressants. (41:13) But to me, I felt like it still would be better than just the daily day to day, you know, management of diabetes. (41:20) I was really willing to go down that road.

Scott Benner (41:22) Part of this then for you is just a desire to continue looking. (41:27) Yeah. (41:28) Okay.

Kelly (41:28) Yeah. (41:28) And granted, I don't know what Good. (41:30) I'll be able to do in the future. (41:31) Right? (41:31) This I may not be able to I I don't know what will happen, let's say, a year or two years from now.

Kelly (41:36) Like, if this doesn't work, you know, do I do we do it again, or am I allowed to then pursue the other path? (41:42) I'm not really sure what the answer is there yet.

Scott Benner (41:45) Mhmm.

Kelly (41:46) But I certainly think I would be open to continuing to pursue cell based therapies. (41:51) You know, we they call these functional cures. (41:53) Right? (41:53) Because it's never gonna restart your pancreas. (41:56) That's never that's never gonna happen.

Kelly (41:57) But we have other they have other procedures that they can do that essentially will cure you of diabetes, and that they are these cell based therapies.

Scott Benner (42:08) Yeah. (42:08) I don't well, I'll tell you, like, I wonder when you said it's never gonna happen like that. (42:12) I wonder how it is gonna happen because things that seem disconnected now but maybe aren't completely. (42:19) Like, I I I witnessed a person going to GLP recently. (42:22) He doesn't have diabetes.

Scott Benner (42:23) Right? (42:23) But, like, just look at metabolically what happened to this person. (42:27) So much inflammation left their body and so many different impacts of inflammation. (42:31) Then you see type ones who take it who, you know, have a decrease in their insulin needs. (42:35) You know, like Yes.

Scott Benner (42:36) And then I think back to twenty years ago when I had some researcher on and kinda wondering out loud, are those beta cells in my pancreas, are they are they really gone? (42:47) Are they ruined? (42:48) Or is there just so much I remember these words. (42:50) There's there's just so much inflammation in there that they can't move. (42:53) They can't do what they're supposed to do.

Scott Benner (42:55) And and that's one of the things that somebody's been studying for a while. (42:58) Like, is it just all, like is it your immune system attacking? (43:03) Like, I don't know. (43:03) Like, I just wonder, like, is there a cocktail of things, or are you right? (43:07) Is it you have an autoimmune response.

Scott Benner (43:09) It is just too harsh. (43:11) Even if we could magically flip those beta cells back on, your immune system would come back in and be like, oh, no.

Kelly (43:16) Would come

Scott Benner (43:16) back and

Kelly (43:17) attack it.

Scott Benner (43:18) Yeah. (43:18) And grab them again. (43:19) Like, is this more about autoimmunity than it is about the pancreas? (43:23) Like, you know, I don't like I

Kelly (43:25) think it's all of that. (43:26) Sure.

Scott Benner (43:26) Yeah. (43:26) It's so much of it. (43:27) Right? (43:27) And and in the meantime, good people, like the ones you're dealing with, they're like, I'm gonna take this piece of it here and focus on this piece right here. (43:35) Mhmm.

Scott Benner (43:35) You know? (43:35) And I'm gonna work on cell therapy because, like you said, functionally I mean, honestly, if somebody could put four slits in your omentum by the way, we'd have to figure out where it is. (43:44) But after we find out where it is. (43:45) Right? (43:45) And we do this and that fixed it, then who the hell cares?

Kelly (43:50) Right.

Scott Benner (43:50) Really. (43:51) You know? (43:51) Like, you you still have other problems. (43:53) You still have an overactive immune system. (43:55) Like you said that if you take all this off your plate, then you just be back to having, like, regular people problems.

Kelly (44:01) Right.

Scott Benner (44:01) Seriously. (44:02) Without all the math and the worry and the low blood sugars and every other thing that comes with it.

Kelly (44:08) Yes. (44:08) No. (44:09) Absolutely. (44:10) And these cells, I mean, they're they're sort of, you know, in in a baby phase right now. (44:15) They're it's only been, what, four weeks.

Scott Benner (44:18) Yeah.

Kelly (44:18) So in the first few weeks, they're trying to survive, and they have to connect to your blood supply. (44:24) And so they're they're busy at work, so I've been told. (44:28) Mhmm.

Scott Benner (44:28) It's awesome.

Kelly (44:29) And if engraftment, you know, succeeds, they'll be able to produce a small, you know, some insulin. (44:34) So I don't know.

Scott Benner (44:35) Question for you.

Kelly (44:36) Yeah.

Scott Benner (44:37) If it starts to work. (44:38) Right? (44:38) Like, I always wake up in a couple days, you know, fourteen days from now, and you're like, hey. (44:43) I've got low overnight for no real reason. (44:45) I'm gonna turn my basal down.

Scott Benner (44:46) Like or, you know, like, that kind of thing happens, you start noticing you use less insulin. (44:50) Is there any reason you can't go back and go, hey, doc. (44:52) Why don't you shove some more of them in there? (44:54) Right?

Kelly (44:56) Well, unfortunately, I don't think it will work that way for me. (45:00) So their research partner I think the study was funded by a Japanese pharmaceutical company. (45:05) So they're obviously heavily involved in this. (45:08) And

Scott Benner (45:08) Oh, they need to track your progress.

Kelly (45:09) And I think even my blood, my the blood tests that I take every week get sent over to Japan for additional testing. (45:16) So it's kinda fascinating, but, yeah, they they certainly are in control of some of the decisions here. (45:22) So I don't know that they'll let me just go for round two right away.

Scott Benner (45:25) I interviewed a lady one time who did one of those, I think, the Vertex pouch or one of those pouches. (45:29) Yes. (45:30) So very nice. (45:31) And it was a blind study, so she didn't know if she you know, they didn't tell her if they act they actually opened her up, put a pouch in, didn't tell her if it had the cells in or not. (45:37) Oh

Kelly (45:38) my gosh. (45:38) Yeah.

Scott Benner (45:38) Right? (45:39) So she's out in front trying to help everybody out, which is awesome. (45:42) But she starts seeing a real decrease in her needs, her insulin needs. (45:45) But then they took the pouch back out. (45:47) And I told her, was like, I would have left the country.

Scott Benner (45:49) I would have been like, hey. (45:50) I know I said I wanted to be part of this, but you screw off. (45:53) I'm I'm I'm out of here. (45:54) You're not taking my pouch back. (45:56) Yeah.

Scott Benner (45:56) Ain't that crazy? (45:57) Because they had to take it back out again because that was the part in the study they were up to.

Kelly (46:01) Oh, see. (46:01) I don't know that I could do that.

Scott Benner (46:03) Yeah. (46:03) No. (46:03) I would I I told her I I would've I would've went to Mexico. (46:06) I would've been like, goodbye.

Kelly (46:07) There's no way.

Scott Benner (46:07) Yeah. (46:08) Sorry. (46:08) I'm leaving. (46:09) You're not taking my pouch. (46:10) Right.

Scott Benner (46:11) Yeah. (46:11) Right. (46:11) But I just think, like, in that same vein, you were nice enough to jump into this at this point. (46:18) And it would I'd feel personally sad for you if, like, two years from now, they realized they should've just given you, like, 18 more ounces of, you know, of of piggy stuff and that they still could give it to you, but you're part of, like, some studies so they can't change it for you. (46:31) So thank you from everybody listening.

Scott Benner (46:33) I we really appreciate that you did this. (46:35) It's awesome.

Kelly (46:36) Yeah. (46:36) No. (46:36) Absolutely. (46:37) I hope that it's you know, and I imagine I'll be in the research books, and I hope that this will help, you know, type ones, in the future so we can start to identify whether this is this is a path that will, you know, help all of us.

Scott Benner (46:50) Wouldn't it be awesome? (46:51) I mean, an outpatient procedure that you basically took an Advil to, like, get through the discomfort of it.

Kelly (46:58) Very easy surgery, really. (46:59) Yeah. (47:00) Were help. (47:00) Surgeries in my life, this was easy.

Scott Benner (47:02) If that were to help something or even be the beginning of something, it would just Yes. (47:05) It would just be incredible.

Kelly (47:07) Absolutely.

Scott Benner (47:08) When you think about the future with diabetes, if, let's say, you have a a decreased need and it does take away some of your decision making that has to happen during the day. (47:18) Can you imagine other ways to help yourself? (47:21) Like, have you, like, have you thought of, like, other things you could do to release the burden a little bit to help the burnout?

Kelly (47:28) No. (47:29) And I think that's a great question. (47:31) I I it's just always there. (47:34) You know, in some days, maybe it's you feel it more than others, but I think I struggle the most with you wanna go out. (47:42) There's certain meals that I know are not gonna be great for blood sugar management.

Kelly (47:47) So it's just, like, be so nice to just be able to go to a restaurant with your family and just order the meal that you want and not have any guilt or any worry or even, you know, be able to go take an exercise class and not sit here and have to do all these implement all these strategies to prevent yourself from going high or low. (48:03) You know? (48:03) I think just being able to remove all of that would be amazing.

Scott Benner (48:07) Talk about the guilt for a second. (48:08) What do you mean the guilt?

Kelly (48:09) I guess I'll give you just an example. (48:11) Like, if you're gonna go out to dinner with your family. (48:13) Right? (48:13) And so and we all know carb counting is it's it's not an exact science. (48:17) So there are certain meals I think I generally would avoid eating because I know they're going to be difficult, You know?

Kelly (48:24) No matter how well I do with the carb counting or pre bolusing, it just sometimes doesn't work. (48:29) Right? (48:29) Yeah. (48:30) You know, that's just another thing I think that frustrates me with them with diabetes is you just that's what happened to it. (48:35) Like, no.

Kelly (48:35) I'm not gonna do that or, you know, not gonna have ice cream with the kids. (48:39) We, you know, we take the kids out for ice cream. (48:40) I never get it. (48:41) Never. (48:42) Because I don't wanna deal with it.

Scott Benner (48:43) Yeah. (48:43) But the guilt is that you're not enjoying the ice cream with the kids in that scenario.

Kelly (48:49) Maybe the guilt is if you if you do partake. (48:52) Yeah. (48:52) If there's a time where you do partake in something that's, you know, gonna not be great for your blood sugar and then you're, like, feeling bad about it three or four hours later. (48:59) I think sometimes I do. (49:00) It's like, oh, why did I eat that?

Kelly (49:01) I knew I shouldn't have had that. (49:03) You know? (49:04) Like, some birthday cake, like, at someone's house. (49:06) That's a good example. (49:06) I had birthday cake recently, and I'm like, oh, just a tiny piece.

Kelly (49:09) It'll be fine. (49:10) No. (49:10) It wasn't fine.

Scott Benner (49:12) So the the guilt can come in a lot of different ways. (49:14) Like, so you could you could feel guilty for not partaking with your family. (49:17) You could feel guilty after your blood sugar goes up later. (49:21) You could feel you feel guilty because it's a thing we all have to talk about or deal with or even guilty then if you try to ignore it, then you feel guilty for ignoring it.

Kelly (49:31) Yeah. (49:31) No. (49:31) That's all that's that's true.

Scott Benner (49:33) Right? (49:33) Yeah. (49:34) Yes. (49:34) And I'm missing some examples too, would imagine.

Kelly (49:37) No. (49:38) I think we definitely deal with all of that as type ones. (49:41) I I think that's very accurate.

Scott Benner (49:43) Every day doesn't stop.

Kelly (49:44) Yeah. (49:45) It it never stops. (49:46) It's always there.

Scott Benner (49:47) Jeez. (49:48) I I'm sorry. (49:49) I just as my daughter gets older, I think more and more about these parts of it. (49:53) You know?

Kelly (49:54) Well, you know, I I it's and it's hard. (49:57) Look. (49:57) We all have our moments, our struggles with diabetes, but I think for the most part, I think a lot of us care about managing it. (50:07) Right? (50:08) We don't we don't wanna have problems.

Kelly (50:09) And so I'm thankful, knock on wood, that after three years, I don't have any health issues and I was able to have two successful pregnancies. (50:17) And I when I talk to parents that have young children that, like, just got diagnosed, you know, they just can't imagine, like, how are we gonna get through this? (50:25) And, like, what's gonna happen when they get older? (50:27) And it's like, oh, I'm like, you can do it. (50:29) It's it's not gonna be easy.

Kelly (50:31) Like, they can do every everything that a, you know, a nondiabetic, can do, whether it's, you know, certain sports. (50:38) We we can do all of it. (50:40) It's just that it it takes a it just takes a little more focus. (50:43) We've gotta, you know, closely manage our our sugars, and I know that that's not fun for any of us, but it's not like we we can't do you know? (50:51) No.

Scott Benner (50:51) You can do it. (50:52) It's just it's there's a human aspect of it that stops people from responding the way that that the the situation needs all the time. (51:00) Yeah. (51:01) You know? (51:01) So you have this I don't know if there's this duality happening.

Scott Benner (51:04) Right? (51:05) Like, you're like, I I can put all this effort into it, but then and I'm happy to put the effort in, but then the burnout and you can't put the effort in, and then your blood sugar gets higher, it bounces around, then you feel terrible physically, then you have the guilt that you didn't do something about it. (51:18) Like, Yeah. (51:18) I it creates an action, a a stillness where you're not doing anything all of a sudden on any front.

Kelly (51:24) I mean and all of that is true. (51:25) And I think to say that you feel like that every single day, I don't think I do, but, you know, you you absolutely have those moments that, you know, as a type one.

Scott Benner (51:35) Yeah. (51:36) And you don't wanna have them, like, in your neighbor's house while everybody's singing happy birthday. (51:40) Yeah. (51:40) Right. (51:41) Right.

Kelly (51:42) Or Right.

Scott Benner (51:43) Or, you know, Thanksgiving when your grandmother, you know, your your cousin's like, oh, she's not having pie. (51:50) And you're like, no. (51:50) Yeah. (51:51) Yeah. (51:51) I I what's something wrong with my pie?

Scott Benner (51:53) What's wrong with my pie, Kelly? (51:55) Yeah. (51:55) Yeah. (51:56) There's nothing wrong with it. (51:57) My I can't take the

Kelly (51:59) food away from you because they're like, you can't eat that.

Scott Benner (52:01) You can't the did the old ladies do that? (52:03) Did they

Kelly (52:03) Oh, yeah.

Scott Benner (52:04) Yeah. (52:04) Yeah. (52:05) Give me that. (52:06) You don't want that.

Kelly (52:07) Yeah.

Scott Benner (52:08) Well, they're probably right too. (52:10) Damn it. (52:10) But you're like

Kelly (52:11) We're like, we know we shouldn't have this, but, you know

Scott Benner (52:14) Oh my gosh.

Kelly (52:15) What do you know about pre bolusing? (52:16) I'm joking.

Scott Benner (52:17) Would it help you if oh god. (52:20) What would help you? (52:22) Could you throw some of it on your husband?

Kelly (52:25) I am all way. (52:25) Like, what I

Scott Benner (52:26) don't know. (52:26) You'd be like, dude, listen. (52:28) You're in charge of dinner bowl or something. (52:29) Like, get it, like because what what occurs to me it's gonna sound silly for a second, especially to adults, but just hang with me for a second. (52:35) When my kid was younger and didn't have any thoughts of her own, I could put her a b one c wherever the hell I wanted it.

Scott Benner (52:42) And I could do it effortlessly because I had a different motivation. (52:46) I'm not burned out. (52:47) I'm not carrying the burden she's carrying. (52:49) So I I have a little I have a little more mental space for it. (52:53) And when you put somebody else in because we're we're talking all the time about these algorithms.

Scott Benner (52:56) Right? (52:56) Like, what's the goal? (52:57) You're hoping one of them works so well one day that your blood sugar just sits at 90 and doesn't move very much.

Kelly (53:03) Right.

Scott Benner (53:03) We're all sitting around hoping that happens. (53:06) What if your husband could do that for you? (53:08) Like, what if he could alleviate a little bit of it at one meal or on, like, I don't know, or on the weekend or, there's no way you'd ever give control over it over to him. (53:17) But like

Kelly (53:17) I was just gonna say that probably would be

Scott Benner (53:19) my You're like you're like, you don't know this guy, but, like, it's it's a bad idea. (53:23) Oh. (53:23) But, like, if I came to your house and I was like, hey. (53:26) I'm gonna live there for a week. (53:27) I'll do all your bolusing.

Scott Benner (53:29) Like, don't you think at the end of the week, you'd be like, this was awesome.

Kelly (53:33) Well, you don't think see, I just think about there's a control piece to it too. (53:36) Right? (53:37) Like, I might feel strange that I can't take my whole bolus or see where my blood sugar is heading if I put all of that on someone else, and I'm like.

Scott Benner (53:47) Well, yeah. (53:48) But treat me like a robot for a second. (53:50) Let let's say it was a robot that showed up at your house, and it was making all the decisions for you. (53:54) Or that you you'd be would you be okay with that?

Kelly (53:57) Yeah. (53:58) If it could control all the highs and the lows and I didn't to think about anything, then yes.

Scott Benner (54:02) Then do you think that would make the burnout go away?

Kelly (54:04) Oh, sure. (54:05) It would. (54:05) Absolutely. (54:06) Okay. (54:06) You know, and as long as I don't need to worry about, you know, any bad hypoglycemia episodes and we're putting a robot in charge of all this, so that would be amazing.

Kelly (54:15) And maybe they could also use an insulin that works faster too. (54:18) We can throw that in.

Scott Benner (54:19) Why don't we teach it to vacuum? (54:20) Why don't we teach it to vacuum while we're at it? (54:23) That's all I'm That would

Kelly (54:24) be great.

Scott Benner (54:25) Well, goddamn right. (54:27) I hope that I'm doing a good job of picking through your psyche about this. (54:31) Like, I I wanna understand, like, I I get that you can feel guilty at times. (54:34) I get that you feel burnout. (54:36) I get that it sucks.

Scott Benner (54:36) Like, I understand all that, but I don't know that contextually people listening would be able to, like, figure out the why. (54:43) I I would imagine because the I think the way people's minds work is no matter what you say, someone's gonna say, yeah. (54:48) But, yeah. (54:49) But this Mhmm. (54:49) Yeah.

Scott Benner (54:50) But that Well, I

Kelly (54:50) had experienced some of that. (54:52) People were like, why would you wanna do a study? (54:54) Why would you wanna participate in something where you don't even know if this is gonna work? (54:58) Like, well, that's the whole point. (54:59) It's a clinical trial.

Scott Benner (55:01) Yeah. (55:01) We get if no if no one does it, we're never gonna find out.

Kelly (55:04) We're never gonna get anywhere if no one signs up for this, and I saw a benefit to me in this for sure. (55:10) I mean, based on what we've learned, the data from the other studies, and this certainly this is happening eleven years after the first porcine transplant. (55:21) So a lot has, you know, changed since that time, I would imagine. (55:24) I just thought I wanna be part of something that has the potential to change, you know, the future for for type one diabetics.

Scott Benner (55:32) Yeah. (55:32) No. (55:32) I said it before. (55:33) I'll say it again. (55:34) I I appreciate it.

Scott Benner (55:34) I think it's lovely that you did

Kelly (55:36) you.

Scott Benner (55:36) You should have responded to that person and said, what if there was a trial that would stop you from being a shithead? (55:40) Wouldn't you do it?

Kelly (55:43) They were like, why wouldn't you sign up for the other one? (55:46) The like, the why wouldn't you do the the cadaver islets? (55:50) It's a guarantee. (55:50) I said, well, yes. (55:51) I understand that, but, also, you know, there's immunosuppressants involved.

Kelly (55:55) Like, obviously, there are things you have to weigh in each of these studies.

Scott Benner (55:59) Immunosuppressants are no joke. (56:01) I've I've spoken to a number of people who've had to have transplants. (56:04) They wasn't, like, it wasn't the thing they decided. (56:06) They were only like, hey. (56:07) Let's try it.

Scott Benner (56:08) Like, it happened to them. (56:09) They had to do it, and that ain't easy. (56:12) And it it that's its own new problem. (56:14) Trust me. (56:14) You're burned out on that just as much as the other thing.

Scott Benner (56:17) Now you're gonna be burned out on something else and you're gonna have insulin. (56:19) And then by the way, I've also I've also interviewed people who've had three pancreases. (56:24) Wow. (56:25) They work and then they stop they give them another one and then it works and then it stops and they give them another like like that, you know, the I think people get confused sometimes. (56:35) They think medicine is television.

Scott Benner (56:37) Like, it's not it's not this isn't a sci fi show where everything works. (56:40) You you know what I mean? (56:41) Like, these are it's 2025. (56:43) We're trying it. (56:44) And it's you know, some of it works and some of it doesn't.

Kelly (56:47) Good news, I mean, for those that do pursue the cadaver islets, compared to a pancreas transplant, I mean, you're in the full dose anti rejection drugs the rest of your life, which come with risks. (56:58) Yeah. (56:58) For sure. (56:59) The this when you do an islet cell transplant, the dosage is is is far less than a major organ transplant. (57:06) So that's good, but it's not you know, it doesn't come with no risk.

Kelly (57:09) Right? (57:09) You're still trading, you know, one thing for another. (57:12) And so, yeah, I think anybody who's considering that has to has to weigh the the pros and the cons. (57:17) But I certainly would have considered it. (57:19) I from the the research that I did, I thought it was a for whatever reason, I really felt strongly that it would be better than having diabetes.

Kelly (57:26) So I was heading down that path. (57:29) And, you know, once insurance kinda fell through, I said, okay. (57:32) Well, maybe the next path to take is to try to participate in a clinical trial because, you know, the I won't have to worry about going through insurance and Yeah. (57:41) You know, I can help.

Scott Benner (57:43) Your husband was on board with this. (57:45) Did he have any reservations when you brought it up?

Kelly (57:47) Yeah. (57:48) No. (57:48) I think he you know, he's always been very supportive. (57:51) You know? (57:51) And when I told him about this, I think we were both just, at first, very surprised to learn that we had options in the Chicago area

Scott Benner (57:58) Yeah.

Kelly (57:59) More than I ever knew. (58:01) I really knew nothing about these trials. (58:03) And so, I had spoken to four different research hospitals in the area. (58:08) Just landed on, UIC or University of Illinois in Chicago, but he supported it. (58:13) He he looked at you know, I had emailed him some information about the study and just said if this is something you really wanna do, definitely support it.

Kelly (58:21) And, I mean, I flat out asked the doctor. (58:23) I just need to know what the real risks are here. (58:25) I have two young children. (58:26) So if, like, dying is a risk. (58:28) Like, I need to know that.

Kelly (58:29) You know?

Scott Benner (58:30) Right.

Kelly (58:30) I but, you know and, of course, I think what I learned in speaking to the research team and looking at the other studies, I mean, no one has died from doing a porcine transplant. (58:41) The worst that could possibly happen here is it just doesn't the cells don't produce enough insulin for us to get off of synthetic insulin, but they certainly could work to some extent. (58:50) And I think that even that would be really just a break for me.

Scott Benner (58:55) Yeah. (58:56) Well, good for I I I hope so too. (58:57) Like, I I hope it I just I don't know. (58:59) I I I hope the best for all of this, and I'm very pleased for people to be out in the world trying to put push this stuff forward. (59:07) And, they'll have

Kelly (59:07) Oh, absolutely.

Scott Benner (59:08) Hopefully, they'll have good success and be able to share it with everybody.

Kelly (59:11) Yes. (59:12) That is certainly the hope. (59:13) And I do believe that's where we're headed. (59:15) Right? (59:15) There's a horrible amount work being done in this space and has been for a very long time.

Kelly (59:19) Sure. (59:20) You know, people think, oh gosh. (59:21) This is so new. (59:21) Why are you doing this? (59:22) It's like, it's not really new.

Kelly (59:24) I mean, the the the one of the surgeons did his first transplant in 1996. (59:28) It's this is not new.

Scott Benner (59:29) No. (59:29) I've I interviewed somebody, I mean, easily fifteen years ago about, like, those Vertex, like, pouches and stuff like that. (59:37) And so, you know, people have been at after this for a while, they just gotta figure out the technology behind it and and Yes. (59:43) Oh, well, alright. (59:44) I got my fingers crossed.

Kelly (59:46) Well, thank you.

Scott Benner (59:46) You're welcome. (59:47) I appreciate you doing this for me too. (59:48) This is, a World Diabetes Day we're recording this.

Kelly (59:51) Oh, that's right. (59:52) Well, that's pretty spectacular.

Scott Benner (59:54) It is.

Kelly (59:54) Well, thank you for having me on. (59:55) I really appreciate it.

Scott Benner (59:56) No. (59:56) You were awesome. (59:57) You really were. (59:58) Hold on one second for me. (59:58) I appreciate this.

Scott Benner (59:59) Give me one second. (1:00:06) Today's episode was sponsored by Skin Grip. (1:00:09) And Skin Grip, they understand what life with diabetes is like, and they know how infuriating it can be when a device falls off prematurely. (1:00:17) They don't want that to happen to you. (1:00:19) Juice Box podcast listeners save 20% off of their first order when you use the link skingrip.com/juicebox.

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